TylerClick Here to Donate | Back to Meet the Kids
A social boy with several friends, Tyler, of Amery, WI would end up with the same kinds of bruises and bumps from playing outside as most other boys. But, when his wounds wouldn’t heal up, his mom Wendy became concerned.
After a visit to their local hospital in Amery, then five-year-old Tyler was diagnosed with Fanconi anemia, a genetic disease that affects the bone marrow. After four years of standard Fanconi anemia treatment, it was determined that Tyler needed a bone marrow transplant to avoid the development of leukemia.
Tyler was transferred to the University of Minnesota Children’s Hospital in 2013 where he underwent a bone marrow transplant (BMT) and multiple rounds of chemotherapy.
One of the most difficult aspects of his treatment was enduring the effects of chemotherapy. “It was the worst,” Tyler says. “It gave me mouth sores that were so bad that I couldn’t eat very much, and I ended up losing 15 pounds. I also couldn’t talk because it hurt so much. So, I had to write everything down instead, on paper.”
Fanconi anemia, which is often represented by having extra fingers or missing a thumb, has led to Tyler being born with 4 fingers on his left hand. This was at one point the cause of bullying at his school. However, his wit and sense of humor eventually won his classmates over. He often participates in energetic displays of what Tyler calls his “four-fingered high fives.”
As of March 2014, Tyler and his family have returned home to Amery. Tyler is back at school, and recently took first place in his boy scouts derby race. “It’s good to be home,” he says.
Steven, 14Click Here to Donate | Back to Meet the Kids
In September 2013, Steven was diagnosed with a rare and aggressive form of cancer. Less than a year later, at age fourteen, he passed away. Originally scheduled for a Radiothon interview, Steven entered intensive care the night before his interview. A few months later, his mother, Kristi, spoke to Ryan and Shannon to honor his memory.
Two years prior to Steven’s diagnosis, he experienced what seemed like a painful appendicitis attack. Kristi took Steven to their local hospital where the CT scan and lab work came back normal.
A nurse, Kristi later accepted a position at the hospital and as part of her training, she added Steven’s information into the new computerized chart system. After doing this, she noticed a note for Steven’s CT scan from two years ago: “Large mass of unidentified origin. Suggest repeat scan.”
The next day, Kristi and Steven returned to the hospital to have an ultrasound performed. Her worst fears were realized when the ultrasound revealed not only one, but two large masses in his pelvis. “It was a nightmare,” she recalls.
After the initial surgery, a biopsy was performed and Steven was sent to the University of Minnesota Masonic Children’s Hospital through Flight For Life.
Kristi, who had given birth to Steven’s little brother Bryden just months prior, drove from Rapid City, SD to Minneapolis with her sister. That same day, the results of the biopsy revealed that Steven had desmoplastic small-round-cell tumor cancer, also known as “Blue Tumor Cancer.”
“We were told that he had about a two percent chance of survival. This cancer is one of the most aggressive and rare pediatric cancers in existence right now,” Kristi says.
Steven was a social butterfly and used to ask strangers while waiting in line at the pharmacy, “So, what are you in here for?” He joked that his family called him the male social butterfly, “a social butterman.”
Kristi, Steven, and Steven’s younger siblings, Abigail, Alyssa, Mason and Bryden all moved into the Ronald McDonald House in September 2013. Steven’s treatment plan included an additional pelvic surgery and eight rounds of chemotherapy followed by a bone marrow transplant in March 2014.
Since desmoplastic small-round-cell tumor cancer is so rare, Steven’s physician Dr. Brenda Weigel based his treatment plan on other more well-known cancers, such as sarcoma.
The experience of Steven’s diagnosis and passing has been extremely difficult for the entire family—but Kristi carries a message of forgiveness.
On Steven’s CaringBridge she wrote, “My hero taught me so much about unconditional love and to forgive the ones who have done us wrong. Steven, you were a better person than I can ever be!”
PeightonClick Here to Donate | Back to Meet the Kids
“Peighton may have cancer but cancer does not have Peighton!” says her mom, Jennifer, of her strong, spunky and sweet daughter.
Peighton, from Royalton, MN was diagnosed with pilomyxoid astrocytoma, a brain cancer, at the age of four. At the time of her diagnosis, four of these tumors were found in her brain and two in her spine.
Yet, despite this devastating news and enduring five years of treatment involving four different regimens, Peighton has not lost her drive for living life.
She participates in various dance classes and gymnastics, while also making time for basketball and softball. Other interests include riding her bike, jumping on her trampoline and playing outside with her dog Savanah.
“She loves to be active,” says mom Jennifer. “She refuses to let her cancer slow her down!”
Peighton is currently nine months out of her treatment, the longest amount of time so far. She is down to only one inoperable tumor in her brain and it is currently stable. Peighton is involved with various childhood cancer foundations and she is helping to raise money for cancer research.
“With cancer research there is hope,” Mom Jennifer says. “Hope for a day when no parent has to hear the words “your child has cancer.”
Karee JoClick Here to Donate | Back to Meet the Kids
Karee Jo, of Watford City, North Dakota is a self-professed “girly-girl.” She loves to dress up like a fashion model and has always loved makeup. She is also a social girl with lots of friends and one of her favorite things is making her friends and family laugh.
When she suddenly stopped being her spunky, outgoing self, and started complaining about difficulty breathing, her parents Cary and Darlene knew something was wrong. After a visit to their local hospital in Watford City in early January 2013, an x-ray of Karee Jo revealed five large tumors inside her pelvis.
Because of the size and location of these masses, her internal organs were being pushed to the side. Karee Jo was immediately transferred to the University of Minnesota where she was diagnosed with a rare form of cancer known as pleuropulmonary blastoma.
To this day, there are only 50 other cases of pleuropulmonary blastoma, and determining the best treatment method has been tricky. Since there is limited information about this form of cancer, Karee Jo’s care team has had to design a treatment plan based on the closest form of cancer.
Karee Jo went through rounds of chemotherapy for several months followed by surgery in November 2013, when the cancerous tumors were removed.
During her thirteen-month treatment, Karee Jo dressed up in trendy outfits and wore eye shadow, blush and lipstick before each visit to the hospital. Most nine-year-olds do not use makeup, but for Karee Jo, this was a method of self-preparation.
“Chemotherapy made me to lose my hair, so I couldn’t style it anymore,” she says regretfully. “So, I do the best I can with styling my clothes and my makeup. It’s my armor, it helps me get through a procedure,” she says.
Karee Jo is now in remission, having finished her last round of chemotherapy in late February, and was able to go home on March 4th.
CadenClick Here to Donate | Back to Meet the Kids
At six years old, Caden of Fall Creek, Wisconsin is learning something that separates him from the rest of his classmates at school— he is learning Braille.
“My teacher calls me a superhero at Braille, because I get 100% on every spelling test” Caden says proudly.
Shortly before his second birthday, Caden’s parents Tracy and Thane noticed a deviation in Caden’s right eye. They brought him in to see an ophthalmologist, but the standard method of treatment made the deviation worse. Caden was quickly pushed up the list to receive an MRI at the University of Minnesota.
The MRI showed a brain tumor located behind Caden’s eyes, along his optic nerves known as a bilateral optic glioma. Due to the location of the tumor, removing it surgically was not an option. Following his second birthday, Caden started chemotherapy treatment.
In his spare time, Caden plays piano and just started taking guitar lessons. He is learning to play using the Suzuki method, where he learns each song through his sense of hearing.
Caden does not let his disease keep him from physical activities he enjoys.
“I love running in races!” he says. “I ran ‘The Biggest Loser’ 1 mile race!”
“Pediatric Hematologist Oncologist Dr. Christopher Moertel has dubbed him Caden “Opposite” Drier- because both his tumor and his amount of energy go against the norm of what is expected during chemotherapy treatment,” Tracy says.
However, with Caden’s tumor progressing, the brain tumor team at Masonic Children’s Hospital had to look beyond the microscope and into the molecules in Caden’s tumor. They discovered a rare mutation called BRAF V600E. Caden started a new treatment plan including a new medication that specifically targets the mutation in Caden’s tumor.
Caden is a pioneering patient, being the youngest patient nationally to receive this care and the first patient ever treated with this medication for this kind of tumor.
Although Caden has not missed a significant amount of school, the side effects of his illness and treatment left their marks. Caden is legally blind as a result of the brain tumor. Since it is unclear if his vision will improve or worsen, he is learning both Braille and print in school.
“Caden’s tumor right now is stable but in the past it has fluctuated, so we are just taking every day as it comes, and being grateful as a family” Tracy says.
In the meantime, Caden is busy winning all of his Braille spelling bees, and planning his future career as a musician. “I want to be a country singer” he says.
AbbyClick Here to Donate | Back to Meet the Kids
Abby Olson can be found building her latest village in the videogame Minecraft, playing dress up, watching Adventure Time, or being with her baby sister. A girl with many interests, talents and hopes, Abby has a gentle disposition with super human strength.
Diagnosed with acute myeloid leukemia at age 8, Abby has a rare type of cancer that’s usually found in adults over the age of 40. She completed her first treatments in March of 2013, six months after her diagnosis on September 23, 2012.
Almost a year after her diagnosis and treatments, Abby relapsed again. Last February, she headed to the Mayo Clinic where she received a Bone Marrow Transplant (BMT) from an unknown, heroic donor.
After many scary complications, Abby was declared “in remission” on April 2nd, 2014.
Despite months of appointments ahead of her to monitor the effects of the transplant, her doctors are not currently concerned about her rejecting the transplant or the return of cancer.
Her baby sister, Jill, has made the biggest difference during Abby’s relapse treatment. Through it all, Jill has been the best distraction, helping Abby through the toughest points of her cancer journey.
Abby is excited to start school again so she can “be normal.” For now, she has a tutor who visits almost every weeknight—her mom, Tricia, says that she is doing very well considering she missed nearly two years of school.
WilliClick Here to Donate | Back to Meet the Kids
On July 7, 2014, Willi Bosch fell off his longboard (a longer and faster type of skateboard). What followed was the kind of night that parents fear. Willi had not been wearing a helmet.
Willi’s friend brought him home and sought out Gerry Bosch, Willi’s dad. According to Bosch, “Willi couldn’t tell me what happened. He couldn’t identify anything that hurt. I asked him whether he thought he could slip his shoes on by himself. When he didn’t move right away, I asked him whether he could slip his foot in if I held them open. He reached down and picked up his shoes and stood up.” That’s when Bosch put Willi in the car and drove to a local hospital. A call was placed to Mary Barsness, Willi’s mom, who was at her family cabin in Wisconsin. She immediately headed home.
Injury Leads to Immediate Surgery
Despite no external injuries, it was determined that Willi had cracked his skull and his brain was bleeding in three places. He had suffered a traumatic brain injury that affected the frontal lobe and rear cortex of the left side of his brain. Because of the severity of the injury, Willi was transferred from United Hospital to Regions Hospital’s Level 1Trauma Center via ambulance. Willi underwent a second CT scan. By midnight, on the basis of the findings of the CT scan and his deteriorating neurologic examination, Willi was prepped for surgery. By 12:30 a.m., Debbie Song, M.D., a pediatric neurosurgeon at Gillette Children’s Specialty Healthcare, performed an emergency decompressive craniectomy during which the left side of Willi’s skull was removed. After surgery, Willi was admitted into the Pediatric Intensive Care Unit at Gillette.
Days after Surgery
The first few days after surgery we were full of uncertainty and fear. “Watching the doctors and nurses care for Willi in such an acute situation was amazing to us,” Barsness recalls. “They were consistently calm, respectful and efficient. And, it wasn’t just Willi they were taking care of—they made sure Gerry and I were eating and drinking, and they encouraged us to sleep. They were helping manage our mental and physical health so we could be as strong as possible for Willi.”
After a while, the friends and families who’d been there in the early days after the accident had to go back to their children, their towns and their jobs. It was scary for the family to think of being there alone, but they never were. “I’m not sure when it happened, but it seemed all along everyone knew us and was part of the team taking care of our whole family,” says Bosch. “For weeks, people hugged us, shared our joys and our fears, and supported us no matter where we were in the hospital.” The family remembers how the staff at Gillette took away so many potential stressors that they would never have been able to anticipate. “They knew what we needed before we did. Their openness to us made us feel safe in a time when nothing felt okay,” says Barsness.
The family’s gratitude to Gillette extends to its donors. “As we walked around Gillette, we saw the plaques of donors and fundraisers who raised money that support the services and facilities at the hospital,” says Barsness. The funds raised support patients and families through events they never planned for. “I had given to Gillette for years, but not once did I ever consider I might someday be using those services. We are so grateful for all of the supports that Gillette has in place for life’s unpredictable moments.”
Waking Up and Coming Home
Initially doctors were unable to predict if Willi would survive, or what condition he would be in if he woke from his coma. Willi “woke up” July 17, 2014, and began talking to his family, doctors and nurses. He knew everyone in the room, could move his whole body and began to learn what had happened to him. After weeks of care conferences, physical therapy, and speech and occupational therapy set-backs and positive leaps, the doctors indicated Willi might be ready to come home. Willi surpassed the goals his doctors set for him to achieve in one week, instead of three months.
On Aug. 18, 2014, Willi came home from Gillette, ready to begin his new life. There will be long-term effects and life changes for both Willi and his family as a result of the traumatic brain injury. Willi will not be able to play hockey or lacrosse, or participate in any other contact sport again. He may have challenges with memory and learning new things.
On the first day of school, Willi joined his freshman classmates at Hill-Murray High School and has been attending school full-time. His family calls his recovery a miracle. They know it was a miracle carried out by many hands.
TyClick Here to Donate | Back to Meet the Kids
On January 3, Chris Olson and his sons, 7-year-old Ty and 9-year-old Braden, were headed home after a Gopher hockey game — a sport near and dear to the family’s heart — when their car was struck in a head-on collision.
Ty and Braden were rushed to the hospital, both with significant injuries — in Braden’s case, broken bones and internal bleeding. Ty’s injuries, however, proved even more severe. Although he broke no bones in the crash, his brain sustained the brunt of the injury. With his prognosis still uncertain, doctors placed Ty in a medically induced coma while the swelling on his brain stem subsided.
Evaluation Leads to Surprise Diagnosis
Three weeks after the accident, Ty arrived at Gillette Children’s Specialty Healthcare and began intensive rehabilitation therapy to address issues with his speech and fine motor skills that resulted from his injury. Chris says that, right away, Gillette felt like home — and not just because Ty had been treated at Gillette for a broken leg, unrelated to the accident, several months earlier. “Even before they evaluated Ty, his doctors spent time talking to him, making him feel comfortable. For him, that was huge.”
Doctors soon made a concerning discovery — Ty’s spinal cord had also sustained damage during the accident. Without surgery to fuse his C1 and C2 vertebrae (the portion of the spinal cord that is located in the neck) Ty’s injury could result in permanent paralysis or worse. “It was shocking and scary,” says Chris of the surprise setback. But it also became a crucial milestone. “It turned the corner for Ty,” says Chris. “He had surgery on a Monday, and by Thursday, he’d eaten his first real meal since the accident.”
True to his inquisitive personality, Ty naturally had questions about the procedure — questions his surgeon was more than willing to answer. “Ty and his surgeon had a 20 minute conversation about his surgery,” remembers Chris. “He took the time to explain everything. Those little things became a lifeline.”
Hockey Marks Special Homecoming
As Ty continued to progress, his resilience and positive attitude inspired his entire family to continue moving forward. “He found little things to motivate himself — the deer stand we would build this summer, Skyping with his first grade class each week,” says Chris, proudly recalling how Ty completed and turned in every single piece of homework that he missed during his hospitalization.
On March 7, nearly two months after the accident, Ty went home. But not right home. His first requested stop was the Xcel Energy Center to watch the state hockey tournament — a request that Chris, a high school hockey coach, was happy to oblige. “Hockey is in our blood,” explains Chris of how the sport aided his family’s healing process. “It’s a huge part of our lives.”
“We Were More Than Just Another Face”
Although it’s unlikely Ty will play his beloved hockey again—the risk to his spinal cord is too great—in typical Ty fashion, he’s looking at the news from a different angle. “He’s golfing, swimming, and wants to play guitar,” says Chris. “And he tells us if he can’t play hockey, he’ll coach it instead.”
Throughout Ty’s time at Gillette, his family came to appreciate the kindness and compassion shown by his entire care team. For example, Chris recalls one Sunday morning, shortly before Ty’s spine surgery, when they received a surprise visitor — Ty’s surgeon dressed in his Sunday best. He’d stopped by to say ‘hello’ before church. “Everyone at Gillette genuinely cared about not only Ty, but our entire family,” says Chris. “We were more than just another face.”
TripClick Here to Donate | Back to Meet the Kids
Out for a morning run, Erica Bratland paused to change the playlist on her iPod. As the music stopped, a distant noise caught her attention. “I don’t know why, but I knew something was wrong,” she recalls. “I started running toward the sound.”
As she neared a busy intersection in her suburban St. Paul, Minnesota, neighborhood, she saw the mangled wreckage of her mother’s car. Her mother was hanging from the driver’s side door, and her then 5-year-old son, Trip, lay on the ground. First responders from a nearby fire station had cut Trip from the wreckage and were working to revive him.
When the ambulance arrived, it rushed Trip to the nearest Level 1 Pediatric Trauma Center, which Regions Hospital operates in partnership with Gillette Children’s Specialty Healthcare. “We were afraid. We didn’t know what was going on,” says Erica. “But from the minute we entered the hospital, we felt supported. The doctors and nurses made a really, really, really scary moment seem manageable.”
“All we wanted was to hear his voice.”
In a coma, Trip wasn’t breathing on his own and had multiple lacerations, including a hole in his cheek. Doctors placed him on a ventilator and moved him to Gillette’s Pediatric Intensive Care Unit (PICU). “Trip was stable but didn’t wake up,” Erica recalls. “All we wanted was to hear his voice and see him open his eyes.”
When Trip’s lung function didn’t improve, Gillette’s surgical team performed exploratory surgery to look for internal damage. They found and repaired a small tear in his intestine. The surgery relieved pressure on his lungs, and within days Trip was breathing on his own without the ventilator.
“That was cause for celebration,” says Erica, “but it was also a day when we had to swallow some very hard truths.” An MRI revealed that Trip had sustained a traumatic brain injury. “No one could tell us for sure what that would mean for him,” says his father, David, a golf course manager. “Trip loves to play golf. We didn’t know if he’d ever speak or walk again, much less swing a golf club.”
Trip’s Recovery Begins at the Region’s Top Rehab Center
Fortunately for the Bratlands, Gillette offers the region’s top rehabilitation center for children and teens and the nation’s largest group of board-certified pediatric rehabilitation medicine physicians. Twelve days after the crash, Trip was strong enough to move from the PICU to the inpatient rehabilitation unit, where he began the hard work of recovery.
Gillette’s intensive program includes daily sessions with physical, occupational and speech therapists. “We entered the unit in May not knowing if Trip would ever walk again,” says Erica. “I didn’t think there was any possibility he would be able to start kindergarten in September.” But Trip surprised everyone. “His recovery happened fast,” his mother says. “It felt like a miracle.”
Less than a month after the crash, Trip went home—walking and talking on his own. Except for a scar on his cheek, he had no visible signs of the near-fatal crash.
Trip continued to receive outpatient physical therapy at Gillette’s St. Paul Clinic for three months. “We don’t know if there will be long-lasting effects of the brain injury,” says Erica. “But for now, we’re grateful for every day. Gillette made the difference between a child heading off to kindergarten and a family facing a holiday without that child. We’re acutely aware that, if we hadn’t gone to Gillette, our outcome would have been very different.”
TannerClick Here to Donate | Back to Meet the Kids
When Leah Feyereisen says Gillette Children’s Specialty Healthcare is “like family to us,” you need only look at her 7-year-old triplet boys, Tanner, Parker and Cole, to understand how true this sentiment is. Although just one of her boys — brave and tender-hearted Tanner, lover of all things baseball — has complex medical needs, Tanner’s lifetime of care has shaped his family’s perspective kindness, compassion, and what it means to be truly grateful.
Leah and Nick Feyereisen learned they were having spontaneous triplets when Leah was just seven weeks pregnant. Several months later, an ultrasound revealed problems — a brain bleed, clubfeet, and a spinal abnormality — with the baby who would be called Tanner. Leah and Nick met with Gillette orthopedic surgeon Steven Koop, M.D. before the boys’ birth. They recall his reassuring words as clearly as his signature bowtie. “He laid out a treatment plan and told us everything would be okay,” remembers Leah.
An Inseparable Bond
Shortly after the boys’ birth on St. Patrick’s Day, Tanner began coming to Gillette for correction of his clubfeet and treatment of cerebral palsy. With Nick working full-time and Leah home with three boys, appointments quickly became a family affair. “My other boys came as babies to every single one of Tanner’s appointments,” says Leah. “I always felt so at home. I’ve never been afraid to go to an appointment at Gillette — ever.”
Tanner has since undergone eight surgeries to treat his clubfeet and cerebral palsy, and to correct his spinal abnormality. In addition to his physical challenges, Tanner deals with Celiac disease and must adhere to strict dietary limitations. But his experiences have only strengthened the triplets’ bond. “These brothers, they just love each other,” says Leah. “They’re very protective. Parker and Cole hate when Tanner’s not around.”
“He’s The Baseball Guy”
A love of baseball has proven an integral part of Tanner’s journey, as well. When the triplets turned 4, just before Tanner’s major spine surgery, the family built a complete baseball field in their backyard. Designated TPC Field after the boys’ first names, the homemade field—built in honor of Nick’s late father, who had requested to see the boys play baseball one last time—has become a cornerstone of their western Wisconsin community. It’s also become a way for the family to pay it forward for the care Tanner has received. This year’s opening day, held in May, was both baseball game and fundraiser for Gillette.
“Tanner will be out there by himself, throwing, running, diving,” says Leah. He’s the baseball guy. He just wants to be on that field.” Tanner can often be spotted running the bases, and sliding into home plate, all while wearing the leg braces he needs to keep his bones and joints growing properly.
Teaching Lessons of Kindness
Leah and Nick have used Tanner’s experiences at Gillette to teach their sons about kindness and acceptance. “You have to teach your kids to be kind,” says Leah. “You can’t just ‘shush’ them when they ask why a person needs a wheelchair.” When other kids ask why Tanner wears leg braces, for example, she encourages her boys to explain it in their own words. “I tell them, let’s help teach these kids about disabilities.”
Those lessons are already paying off. After Tanner’s most recent surgery, all three boys were participating in an evening craft activity at the hospital when they began interacting with a young patient being treated for severe burns. “The mom started crying because it was the first time other kids had played with her child,” remembers Leah. “That’s why I’m proud of my kids. And it’s all because of Gillette.”
“Our number one rule is ‘be kind, be kind, be kind,’” says Leah. “My kids can hug me; they can tell me they love me. I feel so lucky because we’ve been surrounded by love.”
OliveClick Here to Donate | Back to Meet the Kids
Today, Olive’s parents treasure hearing the pitter-patter of her little feet throughout their home.
Olive may be walking today, but her small steps are a major accomplishment for her family, who thought she might never walk. “I’ll be in the kitchen and see her little head come bopping around,” says her mom, Dana. “I’m caught off guard because it’s so new—but it’s awesome!”
Olive was born with a congenital heart defect caused by a rare chromosome deletion that has never been reported before. She underwent heart surgery at just six days old.
Olive began visiting Gillette Children’s Specialty Healthcare when, at 1 ½, her development was significantly delayed. Though Olive made great strides in physical and occupational therapies, her parents sought answers from a Gillette neurologist when she continued to lag behind her peers. “Some people said her delays were caused by her heart problems,” remembers Dana. “But we knew something else was going on.”
At Gillette, an MRI revealed previously-undiagnosed abnormalities in Olive’s brain and spine: a Chiari malformation (the back of her brain pushed into her upper spinal column) and a tethered spinal cord (meaning her spinal cord was attached to the tissues surrounding her spinal column). Without surgical correction, she’d continue to fall further and further behind.
In December 2012, Olive had two neurosurgeries at Gillette that corrected her Chiari malformation and released her tethered spinal cord. Soon after these surgeries, doctors also discovered Olive would need a third procedure, emergency surgery to treat hydrocephalus (hydrocephalus, which literally means “water on the brain,” occurs when too much spinal fluid builds up inside the brain, causing permanent brain damage if untreated).
Since her surgeries, Olive’s family has seen remarkable improvements in her balance, coordination, and gross motor skills. She can now communicate with sign language, and play with other kids for the very first time. Just last year, she began walking without assistance.
Olive’s family says the surgeries have opened up a new world for her. “Olive’s neurosurgeries at Gillette are the reason she has come so far in the last year,” says Dana. Physically and cognitively she has made so much progress. It is really unbelievable and amazing how far she has come!”
HaydenClick Here to Donate | Back to Meet the Kids
At 9 years old and in fourth grade, Hayden has already become someone who fights for her dreams. Her biggest dream is for people to treat her just like any other kid.
Hayden—whose favorite things include the color purple, unicorns, American Girl dolls and hanging out with friends—was born eight weeks early, just one week after her family moved back to Minnesota from Colorado. She has a form of cerebral palsy called spastic diplegia, which is characterized by abnormal tightness in her leg muscles. Hayden’s cerebral palsy also causes problems with her upper extremities (making everyday tasks like buttoning a shirt or using pencil challenging) and vision (she wears glasses and has needed two surgeries to correct strabismus, or crossed eyes).
“Cerebral palsy is a birth defect that can damage kids’ brains, cause tight muscles and twist bones,” wrote Hayden in a recent essay. “It’s hard to have cerebral palsy because sometimes everyone feels sorry for you when they see you having surgeries or needing adaptive technology.” Hayden, for instance, uses an iPad in class and wears braces to help keep her muscles stretched.
When Hayden was 4 years old, she received her first of many surgeries at Gillette Children’s Specialty Healthcare—a selective dorsal rhizotomy, which permanently reduced the tightness in her arm and leg muscles. Following the surgery, she underwent five weeks of intensive inpatient rehabilitation while her muscles re-learned to move without their former tightness. For the next three years, annual orthopedic surgeries helped straighten the bones in her legs and feet, improving her ability to walk independently.
Maintains a Sense of Optimism
Despite the painful procedures and lengthy recoveries Hayden has endured, she maintains a sense of optimism. “I am lucky because some kids with cerebral palsy can’t walk or talk,” says Hayden. “Hayden is so strong, positive and cheerful,” writes her mom, Melissa, on her CaringBridge page. “She just wants to be like all of her friends—running, playing and having fun being a kid.”
As Hayden has gotten older, her parents have helped her understand, and cope with, the fact that her disability isn’t going away. Unlike some illnesses, many of Hayden’s struggles with cerebral palsy—from little things like using buttons and zippers to bigger problems with balance and clumsiness—won’t go away after a few years. Instead, they will be lifelong.
Today, Hayden keeps busy with yoga, dance and swimming in lieu of traditional physical (lower extremity) therapy, and plays piano as a form of occupational (upper extremity) therapy. By sharing her story, she hopes to give other people a better understanding of what life is like with cerebral palsy. “Even though I’m still a kid, I feel like I’m doing a good job with my dream because I’ve taught people how to treat a person with a disability fairly. This makes me feel successful.”
JonahClick Here to Donate | Back to Meet the Kids
Jonah, of of Zimmerman, Minn was diagnosed with osteosarcoma, a rare and aggressive bone cancer, in the fall of 2012, after having a persistent pain in his lower leg. Since then, Jonah has been on an intense chemotherapy regimen that wrapped up this past summer. Because of the location and properties of his tumor, doctors had to amputate Jonah’s leg below the knee. Hearing that news was difficult for the family, but Jonah remained positive. His dad Jeff said, “I had more tears as a result of pride in Jonah’s courage and attitude then the actual news he would lose his leg.”
Jonah’s positive attitude and charm have touched the hearts of staff and other patients too. Jonah decided to make the best of each hospital stay by dressing in a different costume for each visit. Some past costumes include: Green the Terrible, Captain Jack Sparrow, Oprah & Barry the Brown Bear Balloon Bundler and Slappy the Clown (pictured). The hospital staff would look forward to seeing each new costume.
Jonah had his last follow-up appointment at Amplatz in October, and is not scheduled to go back for another three months. Last month, Jonah and his family were able to take a trip to Japan as part of Jonah’s “Make A Wish” trip! He was also fitted for a prosthetic leg, and is jumping right back “into life.”
AdalynClick Here to Donate | Back to Meet the Kids
Adalyn of South Saint Paul, Minnesota was diagnosed with Retinoblastoma on September 24, 2012, at mere 9 months old. What originally appeared as a “white glow” in one of Adalyn’s eyes, turned out to be something much more serious. “Never did we imagine that we would be told that she had a tumor in her retina and that it was cancer” says Adalyn’s mom Theresa.
After consulting with their doctors Tim and Theresa were told to take Adalyn to the University of Minnesota’s Amplatz Children’s Hospital, which besides Mayo was the only hospital in Minnesota that treated Retinoblastoma. “We wanted to be at a children’s hospital so we stayed at the University of Minnesota and we are VERY pleased with them” says Theresa. Adalyn was admitted at Amplatz where she received six rounds of chemo broken down into a six month treatment plan, staying two-three days each time depending on how it went. She was sometimes admitted in between chemo treatments for up to four or six days, due to fevers during the treatment plan.
Armed with her taggie blanket, soothie nuks, music and baby dolls, Adalyn demonstrated enormous bravery in the face of chemo treatments and constant hospital visits. Although she hasn’t known life without doctors and hospitals it hasn’t seemed to affect her. She smiled and laughed throughout all of her hospital visits inspiring her family as well as her doctors and nurses.
Since completing her cancer treatment, Adalyn, now 1/2 years old is back at daycare and her family is slowly starting to understand their “new normal” and getting back into a routine. “Cancer is like a home invasion, once it has invaded your life you will never feel safe again” says Tim and Theresa.
CodyClick Here to Donate | Back to Meet the Kids
Last March, Cody sustained life-threatening injuries when the truck he was riding in veered out of control and into a ditch.
The truck’s driver and two other passengers, thankfully, were not seriously hurt. But in a horrific turn of events, Cody was ejected from the truck and trapped, by his seatbelt, against its blistering hot exhaust pipe.
By the time a nearby farmer cut him from the wreckage, third degree burns covered his back. He sustained spine and neck fractures, broken ribs, and shattered bones in both of his legs. He spent 40 days in Gillette Children’s Specialty Healthcare’s Pediatric Intensive Care Unit (PICU) while doctors treated his severe burns with skin grafts, and surgeries repaired his badly broken bones. While under sedation, Cody turned 16-a milestone birthday he never got to celebrate.
Following his PICU stay, Cody remained at Gillette for an additional two months of rehabilitation, where daily physical and occupational therapy helped him regain the abilities he’d lost. “I don’t think Cody would be anywhere near where he is today without his Gillette team pushing and motivating him,” says Tammy. Cody’s determination, paired with an unwavering sense of humor, also lent strength.
As Cody’s body continued to recover, he discovered an equally valuable type of healing could be found by sharing his experience. That realization inspired Cody to create a video documenting his journey from near-death to today. He interviewed family and friends, physicians and nurses at Gillette – and even obtained the 911 recording from the day of his injury – in a thought-provoking recount of his life-changing year.
Today, he Cody shares the video with other teenagers at drivers’ education classes. “It’s important for Cody to tell the story of what happened to him,” explains Tammy. “He wants people to understand that life can change forever in a split second.”
JillianClick Here to Donate | Back to Meet the Kids
Jillian, of Waconia, Minnesota, who loves horseback riding and swimming, started experiencing sharp bodily pains and a high fever a short time after starting pre-school.
At first, her parents Luke and Megan assumed it was just a pre-school related bug, as Jillian was rarely sick-however when the symptoms only became worse, they went to see a specialist at the University of Minnesota in April, 2013.
Luke and Megan received the shock of their lives when Jillian’s blood work identified patterns consistent with a form of leukemia known as B Cell Acute Lymphoblastic Leukemia. Due to the advanced stage of her leukemia, Jillian was continually in pain, resulting in Jillian being admitted to the University of Minnesota’s Amplatz Children’s Hospital a few weeks earlier than planned.
After staying at Amplatz for the first week, Jillian started an on-going chemotherapy treatment plan predicted to last two or up to three-and-half years. During the early stages of treatment, Jillian was in extreme pain even after receiving Morphine, and her fear of needles became even worse as a result of the treatment.
Jillian, who her parents describe as a “sensitive and creative” child, loves fairytales involving princesses and magic- a perspective that Luke and Megan find helpful to incorporate while describing the importance of Jillian’s chemotherapy treatment to her-and to themselves.
“Jillian’s diagnosis is typically thought of as a battle or fight, however, we are choosing to look at this as an opportunity for transformation about how we handle the challenges we are given and so we use the analogy of “lazy caterpillar cells” for her leukemia, and we see the chemo as a strong medicine to turn them into beautiful butterflies” says parents Luke and Megan.
Despite the challenges that Jillian’s illness has brought, Luke, Megan, and Jillian’s sister Delaney have been able to experience kindness in others through what they call “a butterfly effect” occurring when strangers offer the family assistance and help during particularly cumbersome times.
JoslinClick Here to Donate | Back to Meet the Kids
Joslin is an active and intelligent teenager who, according to her mom, Caroline, is wise beyond her years. A straight-A student who participates in everything from student council to math and history clubs, Joslin also volunteers with an inclusion program for students who have disabilities.
Joslin plays a similarly active role in her medical care. Once an avid skier, runner and biker, she first developed problems with her legs and ankles at 9 years old-the result of a painful bone disorder causing her femurs (thigh bones) and tibias (shin bones) to twist abnormally. “She couldn’t keep her skis parallel, and her ankles would give out even after a short bike ride,” explains Caroline. “She felt like she was spraining her ankles whenever she walked.”
When Joslin’s condition worsened as she grew, her family sought answers from experts throughout the U.S. They soon learned that Joslin would need major orthopedic surgery to correct the disorder and prevent future complications. “Without surgery, she’d have profound arthritis and major movement problems by her 30s,” says Caroline.
After consulting with 11 hospitals, Joslin-with her family’s support-decided to undergo surgery at Gillette Children’s Specialty Healthcare, more than 900 miles from her Colorado home. Her family cites Gillette’s pediatric orthopedic expertise and world-renowned James R. Gage Center for Gait and Motion Analysis as key factors in the decision.
Joslin underwent successful surgery in June and returns to Gillette regularly as her bones continue to heal. The entire corrective process will take 12 to 18 months, with an additional surgery possible. “We don’t fully know what the future will hold,” says Caroline. “We’re taking it one day at a time.”
One thing, however, is clear-Joslin’s experience at Gillette has cemented her interest in medicine, genetics or a related field. “She’s a thinker, a researcher, an observer,” describes Caroline. “It’s opened up a lot of ideas for her.”
Joslin’s parents say they’re confident that they searched for, and found, the very best hospital for their daughter. “At Gillette, everyone from surgeons and nurses to bracing specialists is an expert in their field,” says Caroline. “The care is phenomenal.”
KatieClick Here to Donate | Back to Meet the Kids
“You can’t diagnose a miracle,” says Katie’s mom, Edwina, when describing her extraordinary daughter. Katie’s medical journey is unique and, in many ways, still a mystery.
Healthy, pink and kicking at birth, Katie suddenly stopped breathing. Two days later, doctors told Edwina the outcome was grim. “Her brain scans were flat, indicating no activity,” remembers Edwina. “Those were tough days.”
But two days after that, Katie woke up-and, with her family’s help, her brain began the slow process of healing. “We read to her, talked to her, did everything we could to stimulate her,” says Edwina. “Her brain began to rewire itself.”
As Katie continued her remarkable recovery, it became clear that she faced physical limitations. She was soon diagnosed with cerebral palsy, a form of brain damage that prevents her from moving as typically developing children do. Though every child’s cerebral palsy results in different symptoms, Katie’s is especially unusual-it keeps her body in constant motion.
“Katie’s body is a mix of multiple movement disorders conflicting constantly with one another,” explains Edwina. “It’s like nothing doctors have seen before.”
Katie has been coming to Gillette Children’s Specialty Healthcare for most of her life, where evaluation in the hospital’s Center for Gait and Motion Analysis has helped doctors better understand her unique combination of movement problems. Treatments and therapies have improved her muscle tone and strength, helping her gain independence.
“Katie used to have to crawl around our home because her muscles were tight and painful,” says Edwina. “Today, my daughter can walk from room to room without fear of falling. It’s a blessing!”
She adds that Gillette has been equally beneficial to Katie’s self-confidence. “We appreciate the friendships, the smiling faces,” explains Edwina. “Gillette gives children the ability to be themselves, to find out who they are.”
A bright and articulate sixth grader, Katie’s mission in life is helping people understand that children who have special needs are no different from other kids. “She realizes that her ability to speak brings tremendous opportunity to share what it’s like to live with a disability,” says Edwina.
KeeganClick Here to Donate | Back to Meet the Kids
Keegan loves making people laugh. He’s the unofficial class clown of the fourth grade and does stand-up comedy at home with his two brothers, Carter and Colton.
Keegan’s penchant for comedy masks a bravery that’s been developed through a lifetime of health challenges. He has Cleidocranial dysostosis, a condition characterized by abnormal development of bones in the skull and collarbone.
Keegan, for instance, was born with no collarbone and missing major areas of his skull, leaving his brain vulnerable to even the smallest bump. It also causes major dental issues, as most children (including Keegan) develop an entire extra set of adult teeth. As Keegan grew into toddlerhood, his parents struggled to find answers – and did everything they could to protect his vulnerable brain from damage. “He couldn’t climb, run or jump,” remembers Heidi. “He couldn’t be active like a normal child.”
By the time Keegan turned 2, local specialists had been unsuccessful in helping him. Fortunately, Keegan’s community therapist had trained at Gillette Children’s Specialty Healthcare in St. Paul, Minn., and told the family about the hospital’s specialized expertise. “Gillette said to bring him up right away,” said Heidi. “So that’s what we did.”
Keegan’s family has since transferred all of his care to Gillette, where he sees specialists in craniofacial surgery, neurosurgery, dentistry and orthopedics. When Keegan was 3, surgeons added a titanium mesh plate to the unprotected area of his skull, making it safe for him to run and play. He’s had multiple surgeries to correct bone abnormalities in his legs, and extensive dental surgery to remove his duplicate set of teeth.
Today, Keegan “has come a long, long way,” says Heidi. He sees specialists at Gillette on a monthly basis. Although he still faces challenges, he approaches them with an enduring sense of humor and incredible optimism, much like his hero, baseball great Babe Ruth. “Babe Ruth once said, ‘Never let the fear of striking out get in your way,'” explains Heidi. “Keegan lives by that motto.”
LauraClick Here to Donate | Back to Meet the Kids
Two summers ago, Laura was finishing up her summer job at a local landscape nursery and looking forward to her senior year at Cretin-Derham Hall High School in St. Paul. That was when a persistent pain in her leg eventually became so severe that she went in to see her doctor. Within hours of seeing the x-ray, the family was sent to the University of Minnesota to meet with an orthopedic surgeon. Doctors suspected it was an aggressive bone cancer. Further pathology reports confirmed their worst fear. On August 9, 2011 Laura was diagnosed with osteosarcoma (bone cancer).
Laura was immediately scheduled to start chemotherapy treatment, and from August 2011 to April 2012 went through 18 rounds of chemotherapy, 4 blood transfusions and 4 surgeries.
After a 6-month remission, the osteosarcoma unfortunately returned in October 2012- this time in her spine, rib and hip bones. Laura has been receiving treatment at The Journey Clinic at the University of Minnesota since mid-October 2012, forcing her to take an extended break from her studies as a sophomore at the University of Minnesota’s College of Science & Engineering.
After numerous surgeries she has had to use a wheelchair and crutches on and off for two years, and as a result of the chemotherapy Laura has had to sleep in great amounts, an activity that has resulted in her parents dubbing her their “Sleeping Beauty.” In the face of this disease, Laura has shown enormous bravery and patience.
“She has a positive energy, spirit and lots of friends. She’s a very determined student – straight A’s during high school. She uses that determination toward fighting her cancer” Laura’s mother Mary says.
When she is able, Laura uses an iPad to Skype into her classes. Being able to Skype into her class has helped Laura feel “more normal” as well as learning as much as she can about her illness. She has a friend who is in a pre-med program who has been a big help in helping Laura understand the medical part of her journey.
“Nothing I can do about this, so I’ll do what I need to do to make it go away” Laura says.
LukeClick Here to Donate | Back to Meet the Kids
A spunky and observant toddler, Luke is always on the go. “Luke is a busy boy,” says his mom, Sarah. “He doesn’t stop moving!” She also describes her son’s fierce stubbornness-determination that has helped him survive, and continue defying the odds, after a terrifying accident nearly took his life.
In May 2012, Luke pushed through a window screen and fell 10 to 15 feet. He landed on the only piece of cement in his family’s backyard, sustaining a traumatic brain injury.
Sarah and Paul were faced with the unimaginable question of which hospital they wanted to care for their critically injured son. “We told the emergency responders to take him where they would take their own child,” says Sarah.
Luke was rushed to the Level I Pediatric Trauma Center operated by Gillette Children’s Specialty Healthcare and Regions Hospital, where emergency surgery alleviated the pressure inside his skull. “His surgeon told us he had stopped the bleeding in his brain for now, but the next few days would be touch-and-go,” remembers Sarah.
In Gillette’s Pediatric Intensive Care Unit, Luke pulled through his rough first week like a champion. “Luke had the nurses in the PICU wrapped around his finger and he wasn’t even awake,” says Sarah. She recalls, too, the day after Luke woke up from a medically induced coma. “His grandpa was telling a story, gesturing with his hands, and Luke opened his eyes and laughed. That’s when I knew-he’s here, he’s back, he’s happy.”
Luke still faced a long road. After a month at Gillette, his parents brought him home-only to return days later when Luke developed hydrocephalus (excess fluid inside the brain) and needed emergency surgery. That July, Luke spent another 30 days at Gillette when doctors discovered an infection in his brain. A final procedure in October-to replace a piece of Luke’s skull that was removed to help his brain heal-went off without a hitch, and he’s been home ever since.
Today, Luke is walking, talking-and running! He continues to participate in intensive therapies to address weakness on the left side of his body. He also receives treatments to alleviate muscle tightness caused by his brain injury. His parents attribute his recovery to a hardworking and positive attitude in the face of daunting obstacles.
They also credit Luke’s Gillette team-not only for treating Luke’s injury, but for healing the entire family. “Words cannot describe the appreciation we have for the doctors and nurses at Gillette who saved our son’s life,” says Sarah, who notes that even the Gillette housekeeping staff came to know, and care about, their family. “Everyone’s dedication to Luke was remarkable.”
She adds that her son continues to amaze her. “Luke has more strength and courage in his pinky than we have in our entire bodies,” concludes Sarah. “He is a miracle and we are blessed to have him!”
MadisonClick Here to Donate | Back to Meet the Kids
Madison is a precocious kindergartener who has already developed a love of music. She knows the lyrics to every Taylor Swift song, participates in ballet, and learned to play piano even before she could read.
Madison does all of these things from her wheelchair. Born without the lower part of her spine, she’s been coming to Gillette Children’s Specialty Healthcare since she was a week old. “The doctors told us that when Madison is 15, she’ll look 15 from the waist up,” says Pam, “but from the waist down she’ll be tiny.”
The rare congenital condition-caudal regression syndrome-stops the spine from developing. It can cause many issues, including bowel, bladder and leg problems. The family’s pediatrician referred the family to specialists at Gillette, an hour and a half away. “We made many trips to St. Paul that first year, developing a plan for Madison’s future,” says Pam.
Madison has continued coming to Gillette for surgeries and assistive technology-including a wheelchair that she received at age 2. Independence is important to Madison, whose free-spirited personality is apparent. “I remember watching her that first day,” recalls Pam. “I wasn’t sure she was ready for a wheelchair, but she knew just what to do the first time she sat in it!”
Unlike some children born with her condition, Madison doesn’t have heart, neurological or cognitive issues. “We feel incredibly lucky,” adds Pam. “We have the constant reward of hearing Madison say how much she loves us.” Kids often ask Madison why she uses a wheelchair. She’s come up with a simple reply. “My legs don’t work like yours,” she says. “I was just made this way.”
WillClick Here to Donate | Back to Meet the Kids
Will Newell, of Minneapolis, Minnesota is a tough and resilient boy that loves fishing, Nerf guns and being outdoors. His resilience was further tested when he was diagnosed with a rare form of cancer known as sinonasal teratocarcinosarcoma two years ago.
What started out as a sore tooth and facial swelling one Sunday evening in February 2011, turned out to be much more serious, and the following day Will’s parents Mike and Janel Newell took him to a pediatric dentist. After performing an x-ray the dentist immediately sent the family upstairs to an oral surgeon. After a mass was detected, the oral surgeon initially diagnosed it as being benign, however after completing surgery it was determined as malignant. This came as a complete shock for parents Mike and Janel.
“We were afraid that our beautiful son would not even get a chance to make his 7th birthday” Janel says. Will immediately started chemotherapy treatment and endured 13 cycles of chemo including a Maxillectomy at the University of Minnesota from March 2011 until October 2011.
After a year of remission, Will’s cancer unfortunately returned in December 2012, whereupon he continued treatment until July 2013. During that time he had 22 separate hospital stays, with 82 nights in the hospital.
“Will is one tough dude. Even before his diagnosis he was always wise for his age. He handled cancer treatment with amazing resilience” Mike and Janel say. However, his cancer treatment has left its marks on both Will and his family.
“Will isn’t a normal kid any more. He is back in school for 3rd grade and I think he finds it hard to be “on task” for so much time in a row” says Janel.
“He hasn’t gotten a chance to make really good friends in school. He has some children that he’s close too, but being gone so much makes him a little bit of an outsider. That along with missing hair and eyebrows and eyelashes makes him different and sometimes I think that scares the average 8 year old” she says.
Due to the radiation, the left side of his face will probably not grow, and he has moderate hearing loss due to the chemotherapy drugs. Will’s left tear duct was damaged in radiation treatment. His left eye is chronically dripping and causes blurry vision. So far it is not causing health issues, but there is the possibility it will in the future.
Despite his battle with cancer, Will has jumped right back into life. He’s now back at school full-time and he will get to go on all the field trips with his classmates. Mike and Janel plan on enrolling him in swimming lessons and Aikido in the fall and winter.
“We are proud of the way Will and other kids face their treatment. They make the most of it. Most adults wouldn’t be able to do what they do” says Mike and Janel.
Taylor & NathanClick Here to Donate | Back to Meet the Kids
At first, Monica expected the best. “I got a call from our babysitter that she and the kids had been in an accident,” she remembers. “She thought they maybe got a scratch on the face or a broken rib.” When she arrived at the hospital, however, her optimism quickly gave way to fear as she realized the extent of their injuries. “I thought, ‘I’m not in the right room.’ And then I lost it.”
Weick’s children-Taylor, 9, and Nathan, 7-were riding home from school when they experienced a head-on collision. It quickly became clear that Taylor and Nathan needed urgent care. An ambulance took them to Regions Hospital, which partners with Gillette Children’s Specialty Healthcare to provide Minnesota’s first Level I Pediatric Trauma Center.
When Monica and her husband Tony arrived in Gillette’s Pediatric Intensive Care Unit (PICU), they were taken aback by the extent of their kids’ injuries. Both children experienced internal bleeding, bowel injuries and broken bones. Nathan sustained a significant gash on his forehead.
“We Were Right by Their Sides”
Weick says that comfort came from knowing that her children-and her whole family-could rely on Gillette’s caring staff. “The nurses not only helped my kids, but they helped me, too,” she says. “I was the one who was crying, and they supported me.”
The Weicks say they also appreciated being able to stay by their children’s sides after the accident. Gillette’s new PICU includes space for parents or loved ones to stay overnight in a child’s room. “It was so important to be near them, and Gillette made it possible.”
An Amazing Birthday Gift
During their first night in the hospital, the Weicks worried for their children’s lives. By the second day, however, doctors explained that with surgery, expert medical care and rehabilitation therapy, the children would make strong recoveries. Weick says she couldn’t imagine a better gift on that day-her birthday.
In the weeks following the accident, Gillette’s team worked to control the kids’ pain and encouraged them to regain their strength. Through all of the setbacks and steps forward, the Weicks say that Gillette brought comfort. “I can’t ever show how much gratitude I feel toward the doctors and nurses and therapists,” Weick says. “They are amazing.”
“They Saved My Kids’ Lives”
More than six months since the accident, Nathan and Taylor continue to improve. Although they still face challenges, the Weicks say they feel immense gratitude for how far their children have come. “Gillette saved my kids’ lives,” she says. “I am honestly happier and more grateful than I have ever been in my life.”
NaomiClick Here to Donate | Back to Meet the Kids
There’s something special about Naomi-an engaging quality that, for reasons her family can’t quite pinpoint, draws people in. A spirited and charming 5-year-old, Naomi has the uncanny ability to make connections with virtually anyone. “From little kids to elderly ladies to 200-pound football players, Naomi isn’t afraid to engage a single soul!” says her mother, Elizabeth.
Physician’s Reassurance Offers Hope
Elizabeth learned that her daughter would have spina bifida when she was just 20 weeks pregnant. A condition that occurs when the spinal cord fails to develop normally in the earliest months of pregnancy, spina bifida can cause partial paralysis, hydrocephalus (excess fluid on the brain) and other complications.
After her initial shock, a first meeting with Michael Partington, M.D., a pediatric neurosurgeon at Gillette Children’s Specialty Healthcare, significantly altered Elizabeth’s outlook. “He put me at ease,” she remembers of learning about the hospital located just minutes from the family’s St. Paul home. “I knew we would have the very best support system, and the expertise that we needed, right at our fingertips.”
Naomi Takes Her First Steps
Naomi had her first appointment at Gillette as an infant. At age 2, she began weekly physical therapy with Jackie Norling, PT, with the goal of one day walking independently. Elizabeth says she’ll never forget the day Naomi took her first steps, so deeply engaged in conversation with her therapist that she soon had walked an entire length of hallway without assistance.
Elizabeth points to Jackie’s support, coupled with Naomi’s indomitable spirit, for the remarkable milestone that left her in ecstatic tears. “Jackie’s encouragement has been vital to Naomi’s progress, both physically and mentally,” says Elizabeth. “She-and our entire Gillette team-genuinely care about Naomi, just as we do.”
“An Incredible Place!”
Naomi began kindergarten at Somerset Heights Elementary in September and is already a favorite among her classmates, who notice if she’s absent for even a day of school. She may need may need additional surgeries in the future to treat her hydrocephalus and to correct orthopedic complications resulting from spina bifida. Naomi’s family is confident, however, that she will continue overcoming obstacles through sheer determination, spirit, and her Gillette support system.
“It’s the sense of comfort that comes from knowing you’re at the right place for your child,” describes Elizabeth of Gillette. “It’s an incredible place for Naomi-and for us.”
MadisonClick Here to Donate | Back to Meet the Kids
On a chilly winter morning, Missy received an urgent call from her husband just minutes after he’d left to drive their daughter, Madison, to school. That call changed an ordinary day into the most terrifying of her life. “He said there had been an accident and that I needed to come right away,” says Missy.
Injured One Mile From Home
Missy raced to the accident scene, where she found Madison surrounded by emergency personnel and covered in lacerations. She was rushed to the Level I Pediatric Trauma Center operated by Regions Hospital and Gillette Children’s Specialty Healthcare. A CT scan revealed that while Madison’s injuries were severe-she had sustained a traumatic brain injury and significant skull fracture-they were, thankfully, not life-threatening.
In the following days, specialists in Gillette’s Pediatric Intensive Care monitored Madison closely while the swelling in her brain continued to diminish. As Madison healed, Gillette staff ensured that Missy remained at her daughter’s side. “In those moments, being right there with her was most important thing in the world.”
The “Real Madison” Returns
Madison remained at Gillette as she struggled with headaches, challenges with balance and cognition, and partial facial paralysis caused by her injury. Her family found her spirited personality slowly returning. Missy recalls wheeling Madison around the hospital one evening when she asked to push the wheelchair herself. “Madison said, ‘This is how Artie does it in Glee’ and off she went!”
Throughout her recovery, Madison’s family was struck by her sheer willpower. “As soon as she figured out she could walk, she was more determined than ever to move around,” says Missy. “Soon, there was no stopping her!”
The Best Birthday Present Ever
After two weeks at Gillette, Madison returned home in time to celebrate a meaningful milestone-her 7th birthday. She’ll continue to be monitored by Gillette’s neurotrauma team for lingering issues and will receive weekly physical therapy.
Missy says she is grateful that their Gillette team never forgot that, underneath Madison’s injuries and medical concerns, she was a frightened little girl. “They helped her understand how everything they were doing would make her better,” says Missy. “They know how to talk to kids-and they know how to let them be kids. Everyone at Gillette has a heart of gold.”
LoganClick Here to Donate | Back to Meet the Kids
Many little boys walk to the school bus, participate in gym class, and even roughhouse with their friends after school. But for Logan, accomplishing those everyday activities shows how much he’s overcome.
Born With a Nameless Disorder
Logan, 10, was born with a chromosomal abnormality so unusual that it doesn’t have a name. “He had two clubfeet, a cleft lip and palate, and a large mass in his abdomen,” recalls his mother, Tara. He also had a major spinal curvature.
Logan began coming to Gillette Children’s Specialty Healthcare as a baby, where doctors corrected his clubfeet. As he grew, the curve of his spine began putting dangerous pressure on his heart and lungs. “Everyday activities, even breathing, became a constant struggle,” recalls Tara.
Faced With a First-Of-Its-Kind Surgery
In a first-of-its-kind procedure that spanned more than eight months, Gillette doctors surgically attached a metal device, called a halo, to the outside of Logan’s skull. Logan spent months in the hospital wearing the halo and undergoing spinal traction.
Logan then underwent spinal fusion-a highly complex surgery that straightens the spine using metal implants and bone. Because Logan’s spine lacked critical structures, doctors completed the fusion entirely with donor bone.
“Like Everyone Else”
“On the ‘challenge’ scale, Logan was truly off the charts,” says Tara, remembering the day doctors showed her a model of her son’s one-of-a-kind spinal column, which they had created to study before the leading-edge surgery.
Today, after months of preparation, recovery and rehabilitation, the boy who once struggled to keep pace with peers can walk to school-even complete a round of golf-without getting winded. “Logan is my fighter,” says Tara. “He’s determined to be just like everyone else.”
LingClick Here to Donate | Back to Meet the Kids
One fact about Ling’s childhood is clear: she was born ten years ago in China with two clubfeet. Beyond that, the story of her first 16 months is cloudy.
When Bob and Fay adopted Ling, they knew that their daughter had health challenges. In fact, rudimentary medical records showed that she had suffered a coma as an infant, and her weight had dropped to only 3 pounds. But it wasn’t until the family came to Gillette that Ling’s parents understood the full extent of their daughter’s needs.
She Almost Starved to Death
Even after successful treatment of her clubfeet at Gillette, Ling had difficulty lifting the front of her feet when walking. Weak muscles left her unable to stand without support. She couldn’t run or jump. With her clubfeet corrected, her parents began to suspect something more was going on with their daughter. “We couldn’t make as many excuses for her being so delayed,” says her mom, Fay.
After multiple tests and medical evaluations, Gillette doctors surmised that Ling had almost starved to death during her first months of life. The malnutrition likely caused her coma and affected the part of her brain that controls motor function and development.
Ling now receives comprehensive care at Gillette, including physical and occupational therapy, strength testing, and has regular visits with a pediatric rehabilitation medicine physician. “We never knew there was such a specialty in medicine,” Fay says, “but we were so relieved when we found it at Gillette!”
“We’re a Strong Family Because of Gillette”
Though Ling still struggles with muscle problems – she continues to see a Gillette neurologist who specializes in muscle disorders – the family says they’ve seen immeasurable improvements, describing their daughter as “healthy and vibrant.” For example, the little girl who missed 28 days of preschool because of illness is now thriving in school. She especially loves science, and is learning to speak both French and Chinese.
“We have a fourth-grader who can swim the butterfly, who aces every spelling test, who has lots and lots of friends, and who has few issues about her health challenges,” her dad, Bob, says proudly. Ling has even learned to play the piano, despite weakness in her arms and hands.
“We haven’t encountered one thing we weren’t able to get done at Gillette,” Bob adds, “and we’re a strong family because of Gillette. Ling is going to have a great life!”
LexiClick Here to Donate | Back to Meet the Kids
Like many little girls, Lexi loves to paint, color and play games on the computer. But there is one major difference: Lexi does these things, and much more, using her feet.
Lexi Nearly Died At Birth
Lexi was born with a severe form of arthrogryposis, a condition that caused her joints to contract before birth-leaving her limbs largely unusable. Some doctors predicted she wouldn’t survive past infancy. “It was the most terrifying experience of my life,” recalls Lexi’s mother, Jamie.
Even after Lexi defied predictions about her survival, many doubted her future. “They told her, ‘You will never walk,’ and she said ‘I will walk!'” remembers Jamie. “She made up her mind to prove everyone wrong.”
Her Feet Became a Lifeline
Lexi faced significant challenges on her path toward independence. Her condition left her arms limp and her legs stiff. In fact, just one part of Lexi’s body was unaffected by her condition: her feet.
By flexing her feet and wriggling her toes, Lexi discovered an extraordinary-and effective-way to interact with the world around her. She taught herself to adeptly maneuver markers, crayons, and even utensils. “You can’t tell her something is impossible,” Jamie says. “She simply won’t listen.”
“There’s Nothing She Can’t Accomplish”
Lexi even defied predictions that she would never walk. Today, she walks freely around her home and uses a power wheelchair for longer distances. She also receives regular care at Gillette Children’s Specialty Healthcare, where her family says her providers focus on what she can do.
One example? Her assistive technology specialists mounted to her wheelchair a custom-fit keyboard and mouse that she can use with her feet. “Because of Gillette, Lexi has everything she needs to remain at the top of her class,” says Jamie. “She knows there’s nothing she can’t accomplish!”
KierstenClick Here to Donate | Back to Meet the Kids
Kiersten was diagnosed with Burkitt’s Lymphoma in August, 2004 when she was 8 years old. Burkitt’s lymphoma is a rare and aggressive form of non-Hodgkins lymphoma, in which tumors form and grow at an alarming, rapid pace. At the time of Kiersten’s diagnosis, her tumor was doubling in size every 48 hours and had reached the size of eight grapefruits.
After ten grueling months of chemotherapy and hospital visits, she was considered cancer free in May, 2005.
Then, during a routine check-up in July, 2005, she was diagnosed with secondary Acute Myelogenous Leukemia (AML). Doctors believe that this cancer was caused by the intense treatments used to treat Burkitt’s earlier that year. As any parent of a child cancer survivor knows, it’s the second diagnosis that is feared most. Kiersten was given a 10 percent chance of survival with this new cancer.
At Children’s Cancer Research Fund, in addition to finding a cure for childhood cancer, our doctors are also looking for ways to make the treatments less toxic. Kiersten’s story represents this need very clearly. But even children who don’t have a second cancer, they deal with other significant long-term effects like hearing loss, difficulty with learning and comprehension and heart issues, among others.
She was admitted to University of Minnesota Amplatz Children’s Hospital for total body radiation and a bone marrow transplant – her only chance at overcoming cancer. She received her bone marrow transplant on October 21, 2005. After one month in the hospital, she was discharged in late November, and got to be home for Christmas. Kiersten never once spent a day alone in the hospital. From the numerous visitors, cards and care packages, to the team of people who cleaned their house top to bottom in preparation for Kiersten’s return home after her bone marrow transplant, the family feels they’ve been truly blessed to be surrounded by so many people who love them.
In October, Kiersten will celebrate seven years cancer free!
Kiersten’s dad Bob often thinks back to a time when he, Alyssa and Kiersten were playing games in her hospital room after her bone marrow transplant. Watching her laugh and have fun when they knew she was tired and very sick helped them to see the capacity of the human spirit. They were amazed how much their family could endure, yet still maintain a positive attitude. When times were tough, they all pitched in and got through it with a smile on our face. Alyssa sometimes looks back now on all the needle pokes, surgeries and chemo sessions when she is facing a difficult time in her life and thinks “If Kiersten could go through cancer with a smile, I can get through this!”.
In the past few years, Kiersten and her family have participated in Children’s Cancer Research Fund’s Time to Fly walk/run event in honor of Kiersten’s battle with cancer. Alyssa’s favorite race memory is from 2010, the first year that Kiersten ran in the 5K run. She had trained all spring and was able to run the entire distance. As Alyssa remembers, “The feeling in my heart when I saw her coming over the hill and into the finishing lane was indescribable. Just a few years earlier she was given a 10 percent chance of surviving…to see her cross that finish line brought tears to my eyes.”
In the years since beating cancer, Kiersten has resumed normal life! She joined her high school’s competition marching band and was nominated to lead the band as drum major this year. She is also part of the school’s speech team and will be starting college classes this fall as a PSEO student. She also recently became a big sister, with the birth of Kathryn in December, 2011. After high school, Kiersten would like to attend the University of Minnesota to become a veterinary pathologist.
JoeClick Here to Donate | Back to Meet the Kids
Joe’s mom, Kristi, had no reason to suspect that the birth of her second child would go anything but smoothly. She experienced a healthy pregnancy and went into labor a week after her due date.
During labor, however, her baby’s heart rate plummeted. After Joe was born, the care team discovered a knot in his umbilical cord. “We noticed immediately that he couldn’t settle down,” remembers Kristi. “One of his nurses remarked that he seemed to be shaking.”
Diagnosed With Cerebral Palsy
Joe spent 10 days in the neonatal intensive care unit, where he underwent multiple tests. But it wasn’t until he missed milestones during his first year that his care team began to officially suspect cerebral palsy-a condition in which brain damage causes abnormal muscle tone and problems with coordination and balance.
Joe received an official diagnosis of spastic quadriplegic cerebral palsy at Gillette Children’s Specialty Healthcare, where he continues to receive comprehensive treatment. “Knowing that we have so much of what Joe needs in one place is amazing,” says Kristi.
Supported by Comprehensive Care
Today, Joe receives extensive specialty services at Gillette. To help ease his muscle spasticity, he receives regular injections of botulinum toxin and phenol into his tight muscles. He also participates in physical, occupational and speech therapy to improve his strength, skills and speaking ability. “Those who know Joe well can understand his speech,” Kristi says. “But at school and with people he doesn’t know, he uses a DynaVox® computer to help with communication. It opens up a world of communication for him.”
Joe’s communication device is mounted directly onto his power wheelchair, customized by Gillette’s seating specialists. “Because of Gillette, Joe has a specially designed wheelchair-and even a bike!” says Kristi. “His therapists also helped us order a special bed that ensures he won’t fall out at night.”
Encouraged to Be Independent
Kristi adds that Gillette’s emphasis on independence has rubbed off on her son. Says Kristi, “At appointments, he’s so comfortable and confident that he says, “Mom, you can stay out here. I’m going to go back by myself.’ I love that!”
A philosophy of independence and inclusion has always been part of the Carr household, where big sister Eleanor, 12, treats Joe like any little brother. “Roughhousing, playing, bike rides-you name it,” says Kristi. “Eleanor doesn’t want her brother to miss out on anything. Gillette has always supported us in helping Joe participate in everything we do as a family.”
EthanClick Here to Donate | Back to Meet the Kids
Finding His Voice Again
“Ethan loves to sing,” said his father, Todd. “He makes a soundtrack wherever he goes.” Consequently, it was not unusual that the first sign anything was wrong with this seven-year-old came from his voice.
“Last January, we noticed his voice quality was changing,” said Ethan’s mother, Dawnshelle. “His voice sounded muffled.” Ethan had undergone a tonsillectomy in October, 2011, but nothing unusual had been noticed. Ethan said his throat felt fine.
On January 12, however, Ethan experienced difficulty breathing while in school. His teacher suggested Ethan get a drink of water. As Ethan leaned over the drinking fountain, he found he couldn’t swallow. Called to the school, Dawnshelle couldn’t believe what she saw. “The top of Ethan’s mouth and all around his uvula looked bumpy, like cauliflower,” she said. “The uvula itself was massive. No wonder Ethan couldn’t swallow!” She rushed him to the pediatrician, who said, “I have no idea what this is.” Dawnshelle was referred to University of Minnesota Amplatz Children’s Hospital Emergency Department.
Thinking the mass might be excess tonsillular tissue, doctors scheduled surgery to remove it. “At this point, Ethan was feeling fine, so he really enjoyed being around some of the cool things at Amplatz,” said Todd. “He enjoyed heated blankets. He loved the cool lighting and the 52-inch television. He made a duct tape wallet in the craft room. Everyone was very kind to him. He is a Lego fanatic and received many Lego kits from the staff.”
On January 13, doctors removed a 2 cm mass on Ethan’s uvula to biopsy. Ethan felt better right away, as he now could breathe and swallow better. “We thought everything was taken care of, and we moved on with life,” said Dawnshelle. Then she got the call.
“On January 18, their doctor called to say Ethan had rhabdomyosarcoma,” said Dawnshelle. “I had never heard of that before. I remember Dr. Rimell saying it was a very rare childhood cancer, but that Ethan had the most treatable form, embryonal, and the location was very favorable. He said Ethan’s prognosis was good. Although terrified, I held on to those positive comments and tried to keep it together in front of our children.” Ethan has a sister, Emma, 13, and a brother, Everett, 5.
That same week, Ethan had his first visit with his oncology team at the Journey Clinic. “There, we learned what life would look like for us in the next eight months,” said Todd. “We felt good to learn that Amplatz Children’s Hospital was a Center of Excellence for sarcomas. We felt we were in the right place.” Ethan’s care was led by Christopher Moertel, M.D.
A PET scan on Saturday and an MRI and spinal tap the following Monday brought more good news. The disease was localized and Stage 1, meaning Ethan’s treatment protocol would be two cycles of chemotherapy over six months with no radiation. A port was implanted for easier infusion.
To get to the point of chemotherapy, however, Ethan had to have another surgery. “This was the lowest point in our journey, because we learned the surgery would result in a partial cleft palate,” said Dawnshelle. “We worried about the effect it might have on Ethan’s singing.” They were happy to learn that Ethan later would be a candidate for reconstruction of his soft palate.
“Just in case the surgery was more extensive than planned, we recorded Ethan singing ‘Jesus, You’re Beautiful’ to capture his voice,” said Todd. “It’s a song we have sung with our kids at bedtime for years.”
Happily, the surgery went well. Two weeks later, Ethan was speaking with little indication of a problem, just a slightly breathy voice. Ethan then began his 15 weeks of chemotherapy.
Despite the surgeries and treatments, Ethan finished second grade, which astounded his physicians. As his chemotherapy progressed, however, he had more nausea and nerve damage. “His leg no longer moves when the physician taps his knee with a reflex hammer,” said Dawnshelle, “and now, when drinking from a water fountain, he has to swallow in a special way or the water comes out of his nose,” she laughed. “But he is resilient. He has found new ways to do things.”
Ethan’s care now consists of once-a-month visits to receive medication to prevent pneumonia. In addition, he will have a scan every three months for the next year. “I just want this to be over for Ethan,” said Todd, who has battled high blood pressure and even landed in the Emergency Department once during Ethan’s journey. “My phobia of hospitals is better than it was,” he laughed, “but we still have a ban on TV medical dramas at our house.”
“The reality of having cancer hit Ethan hard,” said Dawnshelle. “He asks difficult questions now and worries about his medical future. The bad things in life have become real to him.” Yet, he continues to provide his parents with inspiring soundtracks. When he heard about his upcoming Make-a-Wish trip to Walt Disney World, he said, “Well, Mom, I guess I’m going to live.”
ElijahClick Here to Donate | Back to Meet the Kids
Elijah’s mother, Janelle, was halfway through her pregnancy when an ultrasound revealed that she was carrying identical twin boys. And then, in the next beat, she discovered that her babies were in danger. “I barely had a chance to let the news sink in, when they said I was already dilated,” she remembers.
Elijah and his twin brother, Aaron, came into the world at 26 weeks’ gestation, each weighing just over 2 pounds. The boys spent 10 weeks in a neonatal intensive care unit, where brain scans helped to diagnose Elijah with cerebral palsy – a complex condition that causes his muscles to be abnormally tight and contracted.
As the boys grew, it became apparent that Elijah faced challenges his brother didn’t. “I worried that Elijah wouldn’t be able to play sports and do things like his brother would,” Janelle says. “And I worried that Aaron would feel that Elijah got all of the attention because of his special needs.”
At Gillette Children’s Specialty Healthcare, however, the family learned how to help Elijah while keeping the boys’ connection strong. A team of specialists eased Elijah’s tight muscles with medical treatments, assistive technology and therapy. The team involved Aaron in his brother’s treatments whenever possible.
When Elijah turned 5, he underwent selective dorsal rhizotomy surgery – a complex procedure in which a neurosurgeon cuts the sensory nerve rootlets in the spinal cord that are contributing to muscle tightness. Janelle believes strongly that Elijah would be much further behind his peers had he not had the surgery. And his most important peer, of course, is Aaron.
“With hard work and a little adaptation, Elijah can do the same activities as his brother can,” she says. “They have an amazingly close relationship, and Gillette has helped it stay that way.”
DaJuanClick Here to Donate | Back to Meet the Kids
When DaJuan began complaining to his mother, Angela, about a painful and swollen knee, she thought her athletic son had simply gotten bumped or fallen during basketball practice. When DaJuan insisted the pain hadn’t come from an injury, and as his pain worsened, Young rushed him to their local emergency room. What followed turned into a nightmare.
A Devastating Infection Threatened His Life
Emergency room doctors soon discovered that a severe Staphylococcus (Staph) infection had invaded DaJuan’s knee. Highly contagious bacteria, Staph illness can range from mild to, in DaJuan’s case, severe and potentially fatal. As the infection spread from DaJuan’s knee throughout his leg and into his bloodstream, his condition quickly deteriorated. Soon, it became clear that specialized intervention was crucial.
“They told me his life was in danger,” recalls Angela of the urgent phone call she received while at work. “They said he needed to get to Gillette right away.”
Can DaJuan’s Leg Be Saved?
An ambulance ride later, DaJuan was met by a team of orthopedic surgeons and infectious disease specialists at Gillette Children’s Specialty Healthcare, who immediately prepped him for surgery. Angela likens their first minutes at Gillette to arrival at the gates of heaven. “They swooped over him just like angels,” she says. “I didn’t realize, until that point, how close he’d come to dying.”
It soon became clear that DaJuan would survive-but amputation of his leg was still a possibility. Through a series of major surgeries aimed at saving the young athlete’s limb, pediatric orthopedic surgeon Deborah Quanbeck, M.D., would first clean the area and remove diseased bone, then place healing antibiotics throughout the infected tissue.
Today, He’s Faster Than Ever!
Slowly, with each surgery, the infection in DaJuan’s leg began to subside. After a six week stay at Gillette, he left to continue his recovery at home. He took his first steps two months later. Today, two years since contracting the mystery infection, now 10-year-old DaJuan has recovered enough to begin playing sports-and he’s once again among the fastest athletes on the basketball court.
“I went from ‘He might not make it’ to ‘He might lose his leg’ to ‘Look, he’s walking!'” says Angela. “I can’t say thank you to Gillette enough!”
CharlieClick Here to Donate | Back to Meet the Kids
At just 2-weeks-old, Charlie was diagnosed with Epidermolysis Bullosa (EB), a genetic skin condition characterized by fragile skin and easy blistering. This rare genetic disease causes painful open sores on soft tissues inside and outside the body. The skin is so fragile in people with EB that minor rubbing may cause blistering. In some forms, the blisters heal with scarring which can result in permanent change to the skin, for example fingers may fuse and hands contract, reducing movement. Children with EB often have a shorter life span, death most often resulting from infection or severe form of skin cancer that develops over time.
When Charlie and his family look back over the last five years, their journey seems as if it were a dream. Almost as if it never really happened, because when reminded of what life was like before 5-year-old Charlie received his experimental Bone Marrow Transplant (BMT) at the University of Minnesota Amplatz Children’s Hospital, life was simply unimaginable.
From Appleton, Wisconsin Charlie’s parents, Kevin and Trisha, they first learned of EB when they became Charlie’s foster parents. Abandoned at birth, Charlie came home with the Knuths from a hospital in Milwaukee when he was 2 weeks old. His adoption was finalized a year later. Prior to meeting Charlie they no knowledge of this dreadful disease, and can remember being amazed that it even existed simply because they couldn’t imagine a person living this way.
For years Charlie and his entire family suffered from mental anguish while Charlie dealt with constant, unimaginable pain. Along with the many hardships, the most difficult to witness was anticipating painful everyday tasks such as bathing and changing clothes. Dressing changes took at least an hour, and most of the time, were done multiple times during the day. Baths with dressing changes took up to five hours every other day.
Having to watch any child suffer pain on a daily basis is a nightmare for any parent. Especially, in order to care for their child, the parents have to inflict pain. Trisha says, “The pain is something that doesn’t last for seconds or minutes, but hours.” Witnessing Charlie suffer through torturous pain and being unable to help was paralyzing for his family.
Finally, a ray of hope came to Charlie and his family, when they heard about a successful clinical trial that was taking place at the University of Minnesota. It was obvious that Minnesota was where Charlie needed to be.
Trisha said, “I was impressed with the nurses and doctors ability to tweak and discover ways around difficult situations. It seemed that Dr. Wagner and Dr. Tolar were willing to do anything it took to try and make this work. They also understood that we were the experts when it came to dressings and wound care. I have never seen this at any other hospital Charlie has been to.”
Kevin and Trisha were given complete overview of the bone marrow transplant process – the big risks, but also the big potential rewards. They also knew that if they did nothing, Charlie’s disease would progress rapidly and his life would be cut much too short.
Charlie went through the bone marrow transplant, and while he still gets blisters, they are much less severe. Charlie’s life is no longer defined by his dressing changes and his disease. For the first time in his life he is able to live without bandages covering his head. For the first time, Charlie is able to sleep on a pillow at night without his head wrapped. Shortly after his transplant, Charlie got to wear shoes for the first time. These milestones are “Even though the experience was extremely stressful, exhausting, painful, and difficult, we are so blessed that Charlie had this opportunity. I am no longer worried that even rubbing his forehead on the furniture will shear his forehead right off,” said Trisha.
For the first time, Charlie is assisting with his bandage changes and his baths. He now plays in the bathtub instead of screaming and fighting. He helps wash his skin and has taken an active role in his care. He is more independent and has an improved self-esteem.
“Now we have time to spend with our other three children for the first time. The life of our family does not revolve around dressing changes anymore. We can actually schedule activities or just do nothing at all,” says Trisha. Thanks to the research supported by Children’s Cancer Research Fund there will be many more firsts to be had For Charlie and his family in future years to come.
Caleb & MicahClick Here to Donate | Back to Meet the Kids
Update: Caleb and Micah (pictured with brother James) have been enjoying their family’s brand new farm in River Falls, WI. This January, the boys worked with their dad to build “bee boxes” that will provide the family with honey this summer. They have since learned TONS about bees! The boys have also helped build homes for new chickens and piglets on their farm.
Awaiting adoption in Chinese orphanages, brothers Caleb and Micah hadn’t met each other yet. Abandoned at birth, both with significant facial deformities, their futures seemed grim. But their lives were about to converge. More than 12,000 miles away, a local family felt called to adopt children with special needs.
“Kids with disabilities might never find a family,” recalls Caleb and Micah’s father, Jim. “If we could provide a loving home to such a child, shouldn’t we do it?”
Gillette Boosts Their Confidence
Contemplation turned to action as Jim and his wife, Peggy, pursued adopting a child in China. When they saw a picture of a 3-year-old boy with cleft lip and palate, they say they knew he’d become their son. The family scheduled an appointment at Gillette Children’s Specialty Healthcare to learn about the condition. “We felt confident knowing that Gillette could provide all of the services we’d need,” Jim says. “The team is truly incredible.”
The family traveled to China to bring home their newest addition, whom they named Caleb. At Gillette, craniofacial surgeon Robert Wood, M.D., corrected Caleb’s cleft palate and revised a lip repair that had been poorly performed in China. Speech therapy helped Caleb learn to speak with his new mouth. “Imagine being unable to talk, eat properly, or smile for years,” says Peggy. “Gillette changed all of that for Caleb.”
Caleb Gets a Little Brother
Just one year after bringing Caleb home, the family again traveled to China to adopt another boy, Micah, who also had a cleft lip and palate. As with Caleb, successful treatment was a turning point for Micah. Gillette’s craniofacial team performed a surgical procedure that prevents air from escaping through the nose during speech.
“Before the procedure, Micah had difficulty making certain sounds,” remembers Peggy. “Now, he won’t stop talking. He’s a completely different child!”
New Family – New Future
Jim and Peggy have since welcomed three additional adoptive children, all from Ethiopia, into their home. “We don’t know if our other children will ever need Gillette,” says Jim. “But if they do, we have no doubt that they’ll be treated as exceptionally as Caleb and Micah have been.”
After living in Chinese orphanages for their early years, Caleb, age 9, and Micah, age 8, have become part of two new families: the family that gave them a new life in a loving home, and the Gillette family, which gave them a future filled with smiles in the hands of a skilled care team.
BraedenClick Here to Donate | Back to Meet the Kids
Update: Braeden loves the outdoors and hunting is one of his passions, however, it can’t easily be done from a wheelchair. This spring, Braeden was able to take a much-anticipated turkey hunting trip with the United Special Sportsmen Alliance (USSA) an organization that helps kids with special needs have outdoor adventures.
That’s how Michelle describes her son Braeden’s attitude toward living with the most severe form of spina bifida. It was Michelle’s similar mindset just 12 years ago that saved Braeden’s life.
Mom’s Determination Defies Grim Prognosis
Michelle was thrilled when she discovered she was expecting her first child. But her excitement quickly turned to fear when an ultrasound revealed hydrocephalus (water on the brain) and spina bifida (a condition in which the spine doesn’t develop properly). “I cried for days,” she remembers. “It felt like everything I’d hoped for was slipping away.”
But instead of giving up, Michelle took action. She searched – and found – answers, becoming one of the first 20 women to participate in Vanderbilt University’s Management of Myelomeningocele Study (MOMS), which researched the effectiveness of making spinal repairs before birth. Braeden was born seven weeks later.
“It Wasn’t Scary Anymore”
Michael Partington, M.D., a Gillette neurosurgeon, examined Braeden shortly after his birth – and offered much-needed words of hope. “Dr. Partington said to me, ‘Don’t look at this as a death sentence. Look at it as a life,'” says Michelle. “He saw Braeden as a person, not just a diagnosis.”
Although she initially felt apprehensive, early visits to Gillette offered continued reassurance. “Everyone was so sweet, so welcoming,” Michelle recalls. “It felt like family. Suddenly, it wasn’t scary anymore.”
A Confident Young Man
Today, Braeden has undergone more than 30 surgeries to treat his hydrocephalus and to correct problems with his bones and joints. Throughout that time, says Michelle, Gillette has not only helped Braeden stay healthy and active – it’s also shaped the independence and determination he displays today. “To hear from doctors that ‘you can do anything!’ or ‘you should go for it!’ speaks volumes to Braeden,” she says. “It’s a whole team that’s choosing to believe in you.”
“Gillette is our second home,” concludes Michelle. “It’s the children’s hospital equivalent of the Mall of America – we can get everything we need and more.”
Zach, 18Click Here to Donate | Back to Meet the Kids
Zach Sobiech, 18-year-old teen from Stillwater, Minn., was never far from his friends, and his guitar.
Upon his diagnosis of terminal cancer in May 2012, Zach turned to music in a big way – writing and performing songs as a way to say goodbye, at first to his friends and family, and then to the world when millions who became affected by Zach’s heartfelt lyrics and irresistible positivity in the face of adversity.
When Zach passed away on May 20, 2013, his fans pushed ’Clouds’ to up to #1 on iTunes, Spotify and the Billboard charts – a fitting tribute to a remarkable young man.
Zach bravely battled osteosarcoma, a rare bone cancer, with which he was diagnosed at age 14. As the disease progressed, doctors had no more effective treatment options to offer him a cure. Still, Zach decided to live like he always had, with a smile on his face, embracing every day with hope and joy.
Zach and his and his family started the Zach Sobiech Osteosarcoma Fund at Children’s Cancer Research Fund, and directed proceeds from his music and other fundraisers held in his honor to help researchers find better treatments to prevent and cure this devastating disease.
In collaboration with sarcoma expert Dr. Brenda Weigel, one of Children Cancer Research Fund’s Chief Medical Advisors and Zach’s primary doctor, a multi-phase research project is now underway. The project has brought together an A-team of basic and translational scientists with outstanding records of achievement in sarcomaresearch, including a veterinarian who treats canine patients with osteosarcoma. The partnership with Children’s Cancer Research Fund allows 100% of donations made to Zach’s Fund to go directly towards research.
Cancer may have taken Zach too soon, but his spirit remains a beacon of light and benevolence in a world that sometimes weighs too heavily. He has received several prestigious awards posthumously; his video for ‘Clouds’ was awarded an Upper Midwest Emmy award, and Katie Couric presented him with the Dream Maker Award, Children’s Cancer Research Fund’s highest honor. His fund for osteosarcoma research keeps growing, now at nearly $600,000. He will continue to inspire his family, his community and his fans to continue to help the children of tomorrow who learn that they have osteosarcoma.
We’ll see you again, Zach, up in those clouds.
Zac, 11Click Here to Donate | Back to Meet the Kids
“A Walking Ray of Sunshine.” That’s how Carol Ann described her 11-year-old son Zac, of Chisago City, Minn. Despite his life-long battle with a disorder, neurofibromatosis (NF), Zac inspired and brought smiles to the faces to everyone he met.
When Zac was nearly 19-months old, he developed what doctors refer to as “café au lait” spots on his skin. Carol Ann also recalls noticing that he seemed to be stumbling more than his older siblings had at his age. Carol Ann worked at a hospital and started to ask her colleagues about these symptoms, and they recommended she take Zac to a doctor right away.
Carol Ann brought Zac in to the doctor just a few days before Christmas, 2003. After an MRI and some tests, doctors discovered benign tumors in his brain and diagnosed Zac with neurofibromatosis type 1 (NF1), which causes tumors to grow in his brain and along his nerves and lymph nodes — and for which there is no known cure. The difficulty of the diagnosis was compounded because, at the time, Zac’s father Nathan was overseas in Iraq as part of his service with the Minnesota National Guard. Carol Ann, an admitted Christmas enthusiast, recalls, “That Christmas was incredibly tough. Not only was Nathan away from home, but I was dealing with a devastating diagnosis. I did all I could to pull myself together and make it a happy Christmas for the kids.”
NF is one of the most common genetic disorders in the United States. It affects more than 100,000 Americans; more than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay Sachs combined. Though many people have a family history and inherit the disorder, between 30 and 50 percent of cases occur due to a random gene mutation, as was the case for Zac. As a first course of defense, Zac received regular low-dose chemotherapy treatments to stop the growth of the tumors, which continued successfully until he reached age 5. Then, doctors noticed a new tumor, and a biopsy confirmed that it was malignant. Because this tumor was inoperable, doctors had to try different chemotherapy options to shrink it.
One tumor, an optic glioma, left Zac blind in his left eye. In 2009, Zac had surgery to remove painful fibroids that had grown outside of his skull – another common side effect of NF.
Despite the years of chemotherapy, surgeries, long doctors’ appointments and other challenges, Zac remained an inspiration to others with his social intelligence that allowed him to talk to kids and adults alike. Zac “brought out the best in everyone,” says mom Carol Ann .
One of Zac’s favorite activities was helping “coach” his older brother Nick’s hockey team. Before most games, the team’s coaches let Zac have the last word in the locker room. His go-to advice to the players? “All hat tricks, no penalties. Get out there and play hard!” Zac would sit behind the players’ bench during the game, and cheer them on. The team and coaches embraced Zac’s presence on the team. During a playoff game last year, Zac wasn’t allowed to sit behind the bench like he normally does, but instead sat in the seats right next to the bench. When the team won – they skated right over to Zac and pounded their sticks on the glass in celebration. The team even gave their trophy to Zac.
This past spring, the family organized a benefit near Chisago City. Included in the silent auction were drawings that Zac created. The event drew around 700 people and raised more than $24,000 for the Zachary Neurofibromatosis Fund that Zac’s grandfather, Harvey Bartz, organized. As Harvey saw it, “This community wrapped their arms around Zac and his family to say ‘we’re with you.’ Just as important as the money, is seeing the community rally around Zac.”
Zac underwent radiation treatment called tomotherapy, which finished in March, 2011. “Tomotherapy hit him hard,” says Carol Ann. After Zac developed an osteosarcoma in his leg he could no longer walk without crutches. Carol Ann and Zac both vowed “if you keep going Zac, I’ll keep going.” In support of Zac, his classmates have shaved their heads to join the “Zac Pack.”
Zac passed away on November 20th, 2013 at home with his family- a wish he had expressed, as he had grown tired of being in hospitals and was missing his home and family members.
Doctors are hard at work in search of better treatments for Zac and other kids and adults living with NF. Until then, we can all benefit from Zac’s sage advice to “Get out there and play hard!”
AhnaClick Here to Donate | Back to Meet the Kids
Ahna’s tae kwan do classmates respect her focus and intensity. But on the day she received her brown belt, the 9-year-old couldn’t help but giggle and smile. “You could see the excitement in her face,” says her father, Brian.
What you couldn’t see was the struggle Ahna had faced to reach this milestone. “I think about the grieving we went through, wondering if she’d even be able to walk,” remembers her mother, Jennifer. “Then there she was, doing something that a lot of other kids will never do.”
Crib Accident Causes Blood Clot
Eight years earlier, Jennifer had discovered her trapped in the slats of her crib. Both of her legs were entangled, her right leg bent and stuck at the knee. She struggled to pull her daughter free.
Once free, Ahna refused to bear weight on her leg, which was swelling rapidly. When the swelling grew worse, she eventually landed in the emergency room, where an ultrasound revealed deep vein thrombosis-a type of blood clot that can be life-threatening.
Nerve Damage Leads to Deformities
Further testing showed that the blood clot had caused nerve damage, which eventually resulted in muscle imbalances and deformities in her foot. By the time she started school, Ahna struggled to walk and couldn’t keep up with her classmates. “It’s devastating to hear your daughter cry because she’s always the first one tagged at recess,” says her mother.
It became clear that Ahna would need major surgery on her foot. “It was shaped like a lima bean-so twisted that she walked on its side,” says Jennifer. By the time Ahna turned 6, the family was ready for her go through surgery, which involved multiple procedures on the bones, tendons and ligaments in her foot.
“The Difference Is Incredible”
The results of the surgery exceeded all expectations-both in the appearance of Ahna’s foot and in her abilities. “She came home one day and reported that she was in the middle of her class during the physical fitness test,” says her mother. “That’s average!”
One area where Ahna soared above average was in tae kwan do. Quanbeck had recommended incorporating martial arts into her rehabilitation program. Ahna remains a dedicated student, and hopes to get her black belt next year. “We can’t thank Gillette enough for what they’ve done for her,” says Brian.