Meet the Kids

Grady

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Cary Sommer already had one child, so as far as her second pregnancy went, she believed she knew what to expect. That all changed when she was in her doctor’s office for a diabetes test, and began to experience the first symptoms of a placental abruption, a serious medical condition that can cause preterm labor.

“It was incredibly disconcerting,” Cary says. “You’re just going about your day and then now you’re being ambulanced to a hospital for an emergency C-section. 25 weeks is so early, what’s that going to mean for your child?”

Cary’s son, Grady, was born on May 17. He barely weighed two pounds.

He had also endured periventricular leukomalacia (PVL), which is characterized by the death or damage of the white matter in the brain. This is the section of the brain that transmits information between the nerves, spinal cord and separate hemispheres. The symptoms of PVL vary from child to child, but it often makes it much more likely that a child will have difficulty controlling certain motor movements. It also puts a child at a much greater risk of developing cerebral palsy (CP).

Grady and his family would spend the next three months in the hospital.

Coming Home and Next Steps

“When we finally got to take him home it was nice to just be parents for a little while,” Cary says. “Then as he grew and we were coming up on milestones, you started to see him missing them. It was around this time that he was diagnosed with CP and we were introduced to Gillette.”

CP isn’t just one condition. It’s actually a spectrum of movement disorders that manifest in symptoms that vary from child to child. In children like Grady, who had PVL, the most common type of CP that results is called spastic diplegia. This is a form of CP characterized by tight, contracted muscles, especially in the legs.

“Grady was basically in therapy from his infancy on,” Cary says. “As he got older he was pretty mobile, but it was difficult for him to walk. The tightness in the muscles in his legs made it almost impossible to do certain things.”

What is a Rhizotomy?

Around the time Grady was 6, the Sommer’s were told by their specialists that a surgery called select dorsal rhizotomy (SDR), would likely be the next step of his treatment process.

The muscle tightness that comes along with spastic diplegia is both friend and foe, simultaneously holding you up while also holding you back.

Rhizotomy surgery removes the faulty nerve roots in the spinal cord that are misfiring and causing this tightness. This effectively relieves the spasticity of the muscles, the only problem being that now you have to learn how to use muscles you’ve never really used before. The rehabilitation process requires carefully scheduled physical and occupational therapy that usually lasts between four to six weeks.

“No doubt, that’s a long time for a 6 year old to be in the hospital,” Cary says. “But Grady did so much better as an inpatient that we expected. In between his intensive therapies, we watched movies, we played games. It was almost like camp. We actually started calling it “Camp Gillette.”

During his stay, Grady also made multiple friends (both people and animal alike).

“The animal-assisted therapy with the therapy dogs was definitely a highlight,” Cary says. “The other nice thing about being at Gillette is that there’s this beautiful blend of people, many of whom are going through similar things. I think it really had an impact on Grady to look around and realize that he wasn’t the only one who had CP. He made so many friends in the unit, some who lived locally and others from all over the world. We all came from different places, but there was this shared understanding between the kids and their families.”

Looking Ahead

Nearly a year out from his surgery, Cary says that the progress Grady has made has been phenomenal. He’s spent the summer playing cards and board games with his friends, and recently visited the Boundary Waters for the first time.

“I’m incredibly proud of him and can’t wait to see what the future holds,” Cary says. “I think people who don’t have a child or know someone who has a disability occasionally overstate how important it is. Grady’s so much more than his condition and once you get to know him, the fact that he has CP isn’t something you spend too much time thinking about. Are there challenges? Of course, but life is good even when stuff is hard. We do our best to approach each day with that mentality.”

Nick

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Dog Treats Mean Business for Teen Who Has Cerebral Palsy

The statistics are grim. Only 40 percent of adults with disabilities in their prime working years (ages 25-54) have a job, compared to 79 percent of all prime-age adults, according to research by the Brookings Institution. In some portions of the country, that number is as low as 28 percent. On top of that, employees who have disabilities face significant gaps in pay and compensation compared to employees who don’t have disabilities, according to the United States Bureau of Labor and Statistics.

This is a problem that directly affects Gillette Children’s Specialty Healthcare patients, most of whom have complex medical conditions. Many have lifelong conditions such as cerebral palsy that impact them far beyond childhood. While it’s great that Gillette and school districts can help our patients graduate high school and find gainful employment via programs such as Project SEARCH, special education assistance and Individualized Education Programs, many still face the issue of finding jobs as young adults.

One Gillette mother who is aware of this problem is Jennifer Hinze. The Augusta, Wisconsin resident has a 16-year-old son, Nick, who has cerebral palsy. Nick uses a wheelchair and also has epilepsy, but he is just like many of his peers. He is social, enjoys school and his friends, and like many teens he wants to have a part-time job. So Jennifer and Nick put their heads together and came up with a great idea. They both love animals, especially dogs, and like to bake.

Nick’s Dog Treats Products

One day, Jennifer and Nick were baking treats for their dog Hemi, a Teddy (part Shih Tzu and Bichon), and a lightbulb went off. What if they started a part-time business making and selling dog treats? They ran with the idea and launched Nick’s Dog Treats. They started baking goodies in May of 2018 and now have more than 750 followers on Nick’s Facebook page, a newly launched website to sell the cookies, and a YouTube video they filmed to promote the business. They’ve received national orders from Arizona to Alaska, and have even garnered some media attention on ABC affiliate KSTP-TV in St. Paul, Minn. and NBC affiliate WEAU-TV in Eau Claire, Wisc.

“When I’m done with school I want to get a job and make money and work,” Nick said. “I’m really proud about doing this.”

Now, they’re baking about four times a week, delivering packages in-person and mailing them across the country. Jennifer, however, has a loftier goal than running the business with her son. She wants to purchase an actual store and make treats full-time. She’d like to add coffee and pastries to the mix once the store opens.  Even better, Jennifer wants to employ kids who have complex medical conditions or special needs like Nick. The goal is to do that in two years when Nick graduates high school.

“I just want these kids to get out of high school and feel like they are part of the community like everyone else,” Jennifer said. “Many kids who have disabilities graduate and don’t get a job. Kids who have disabilities need to work and be in the community just like their peers. This is our small way of doing that. This isn’t just for Nick, it’s for everybody.”

She is modeling her business off of a successful venture from a woman in her home state of North Carolina. Wilmington resident Amy Wright has two children with Down syndrome. She started a coffee shop called Bitty & Beau’s Coffee. Almost everyone who works there has an intellectual or developmental disability, ranging from Down syndrome to autism to cerebral palsy (read more via CNN). Creating a similar shop that sells coffee, pastries AND dog treats is Jennifer’s ultimate dream.

Jennifer sums up Nick and other kids’ ability to succeed in the business world post-education with this apt perspective: “I have told Nick his whole life he can do anything he wants to do – he just may need to ask for a little help.”

If you’re interested in helping Nick and Jennifer achieve their goal of opening Nick’s Dog Treats and Coffee Company, you can contribute to their GoFundMe page.

Nate

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Nate’s Story

Sixteen-year-old Nate is most himself when he is playing his guitar. He’s been playing since he was around 10 years old, and his favorite songs to play are all over the place – they range from heavy metal Metallica to ska punk band Sublime. What Nate most looks for in a good guitar song is a challenge. But last year, a different kind of challenge came creeping into Nate’s life.

In January 2019, Nate was diagnosed with osteosarcoma, a serious bone cancer. He’d been feeling pain in his left side, and when multiple specialists and several x-rays and MRIs failed to catch the cancer over the course of five months, Nate’s parents, Robin and Mike, brought him back to his primary care doctor’s office one more time.

“Based on the doctor’s reaction, we could tell there was more going on than we previously thought,” Robin said. “I remember sitting in the exam room and I was texting Mike, who was sitting right next to me, saying ‘He’s really quiet…’ There was a lot of leaving the room to talk… everything was setting off alarm bells.”

The doctor told Nate and his parents to go right to an imaging center for a CT scan, which ultimately confirmed their worst fear – Nate had cancer growing on his ribs on his left side, and it was creeping toward his spine.

Mike and Robin were scared and frustrated – what were the next steps? Why couldn’t we have found this earlier? How far had it spread since that first time Nate complained about pain in his side?

“It was hard to hear that they missed something on the x-ray, and it’s hard to think about what we could have done if we’d had Nate’s diagnosis five months earlier and knowing that it spread towards his spine during that time,” Mike said. “I struggle with that, but since then we’ve learned that unfortunately, ours sounds like a pretty typical story for this kind of cancer.”

Grueling Treatment

Nate started chemotherapy right away, which drained his energy and made him swing back and forth between being nauseated with no appetite and being ravenously hungry. Many of the pieces of normal teenage life disappeared. Nate couldn’t go to school, and he spent most of his time in a hospital room with one or both parents. He says it took him a few weeks for him to fully process what was happening to him – he’d never imagined cancer would be part of his life.

“I was completely in a daze, for probably three weeks after I found out,” Nate said. “It didn’t feel like real life, it felt like I was dreaming because everything happened so fast.”

Since then, Nate has endured several rounds of chemotherapy and a major, 10 hour surgery that involved removing several of his ribs and shaving down the bones of his spinal column to ensure that doctors removed all detectable traces of the cancer in his bones. Post-surgery, Nate has had to learn to walk again – at first, just 10 feet at a time. He’s now able to walk multiple laps around his hospital floor, but he says his parents and physical therapists had their work cut out for them every time they had to convince him to get out of bed.

“When you get out of surgery all you want to do is lie in bed and do nothing, so everyone had to push me to do my PT, but I’m glad they did because now I really want to do it for myself,” Nate said. “I don’t want a weak back, I don’t want my arm to hurt – I want to be back where I was before surgery, and that takes a lot of work. It helps to see that it is making a difference.”

Nate says he used to be a glass-half-empty kind of kid when he was younger, but as he grew up, and especially since his cancer diagnosis, he’s left that kind of thinking behind. Even when people tell him that he’d have every right to be angry and upset, he says he just doesn’t see things that way.

“There are definitely things that are scary, and I understand my situation,” Nate said. “But I just don’t think moping around is going to do anything for me.”

Parenting a Teenager With Cancer

Robin and Mike say they are amazed at how positive Nate has been, despite everything he’s been through in the past year. He is incredibly tolerant of essentially being roommates with his parents. When asked about having to spend all his time in the hospital, he focuses on the good parts – like getting to watch The Office late into the night. He even says the hospital beds are actually pretty comfortable. But even in the midst of all his positivity, Nate’s parents can’t help but notice how much really has changed.

“When you have little kids, you’re always watching them to make sure they don’t choke or hurt themselves, and you’re teaching them not to talk to strangers or run out into the street,” Robin said. “But with Nate as a teenager, we were talking about college and future jobs. We thought we were past the parenting phase where we were worried about keeping him alive. But the suddenly, boom… his life is more at risk than it’s ever been. And we can’t protect him.”

Robin and Mike also struggle with answering the question all well-wishers ask when they run into them at school functions or at the grocery store – ‘How is Nate doing?’

“My response is usually, ‘We’re taking it day by day.’” Mike said. “Just because he’s doing better now doesn’t always mean the outcome is going to be what we want. Things in his treatment plan have been going pretty well, but we know there can always come a time when that isn’t the case.”

“We never begrudge anyone for asking that question,” Robin said, “but when you’re not in our shoes you just can’t begin to understand how such a simple question can kind of freeze you.”

Tough Realities

Like many parents, Robin and Mike didn’t know much about childhood cancer before it became part of their lives. They said they’d heard stories about all the new treatment methods being developed for cancer in the past few years, and assumed that the disease was difficult, but beatable. Since Nate’s diagnosis, they’ve learned that childhood cancers and adult cancers are not the same, and advancements in adult treatment often doesn’t have an effect on kids.

While treatments for many adult cancers have improved in recent years, funding for childhood cancer research is much harder to come by. Researchers who have the skills and the ideas to make a difference often don’t have the funding to move forward, slowing progress down significantly. In fact, the therapies used to treat osteosarcoma in kids have not improved in over 30 years.

“If I could give back every gift card, every meal, everything we’ve been given since Nate’s diagnosis and put it into the research they need to better attack this cancer, I would,” Robin said. “Because I think there are brilliant minds out there who want to find answers. Right now, we have no idea what causes Nate’s kind of cancer. If we had even that piece of the puzzle, it would change how doctors go after it.”

Nate in His Element

Through all the chemotherapy, surgery recovery, painful physical therapy sessions and weeks in the hospital, Nate has found solace in two important places – music and faith. He jokes that he’s glad he picked the guitar instead of drums years ago, because a guitar is something he can still play from his hospital bed. He also says that in the year leading up to his cancer diagnosis, his faith became a larger part of his life, a change he thinks came at just the right time.

“The year leading up to this happening I felt I grew a lot closer to God, and then this happened,” Nate said. “My faith has helped me a lot. Right after my diagnosis, everything felt weird and surreal, but after a few weeks I noticed I just wasn’t scared.”

Robin says when Nate plays guitar, he’s not a kid with cancer anymore. In that moment, eyes closed, focused on the music, he’s as completely himself as he could possibly be. Everything else – beeping machines, hospital beds, cancer, – fades away. She remembers one moment that struck her most – Nate was playing a solo from the song YYZ by Rush and it stopped his favorite music therapist, Mark, in his tracks. Mark told Robin that he was impressed for two reasons – first, this solo is incredibly difficult. And second, it has a particularly special meaning.

“He said the notes of the solo are based on an ancient Aramaic prayer that the Hebrews prayed daily to God,” Robin said. “Of all the things Nate could have played, what he chose is essentially a prayer.”

 

 

Alizabeth

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Alizabeth’s Story – A Sparkly Personality

Two years ago, Carrie and Steve already had their hands full. As working parents to five daughters and owners of a cattle ranch in central Minnesota, they were a busy family, but happy that way. But when their youngest, Alizabeth, started feeling sick, everything changed.

Carrie remembers the moment clearly – she was putting Alizabeth’s long blonde hair up in a ponytail when she noticed some lumps on her neck. Not long after, her usually energetic daughter began tiring more quickly, wouldn’t eat and wasn’t acting like herself.  After a few different doctor visits and a trip to the Emergency Room in St. Cloud, they were referred to the University of Minnesota Masonic Children’s Hospital. After a long night, three doctors took Carrie and Steve into a room on the oncology floor to give them the news they feared – Alizabeth had B-cell acute lymphoblastic leukemia.

“We were heartbroken,” Carrie said. “Alizabeth was asleep next to us when we got the news. I’m usually the emotional one, and my husband is the steady rock, but we totally switched roles. He cried and I didn’t – I think I mentally just went somewhere else in that moment.”

Still in shock from the news that their youngest daughter had cancer, Carrie and Steve then called their other daughters to let them know what was going on. A relative had recently died of cancer, and Alizabeth’s sisters were immediately worried for her.

“I still get those questions today,” Carrie said. “We reassured them that Alizabeth’s is a curable type of cancer, but I understand that it’s hard for them not to connect those two situations and worry about her.”

A List of Cant’s

Once she was diagnosed, Alizabeth was put on a long treatment path that included chemotherapy, which caused her to lose her hair, and long hospital stays 92 miles from home. Alizabeth’s treatment left her with a long list of things she can’t do with her sisters. This was especially difficult for her during the summer – some of her favorite activities include showing the family’s cattle, swimming in the lake and riding her bike – all things she couldn’t do anymore because of the risk of illness or injury. Her parents and sisters did the best they could to help her feel included.

“Because she couldn’t swim in the lake over the summer, we got her a little kiddy pool and a unicorn sprinkler in the backyard,” Carrie said. “But it was a really hard summer. We all had a hard time accepting that we couldn’t do some of those things as a whole family anymore.”

A Sparkly Personality

Even when treatments knock Alizabeth’s energy down, her personality shows through. Having 4 older sisters has given made Alizabeth outgoing and optimistic, and she has a love of all things sparkly. She loves unicorns, playing with her puppy and twirling in her favorite dresses. Carrie says she’s constantly impressed by how Alizabeth has adapted and persevered, even when cancer took her old ‘normal’ away from her.

“I was especially impressed when she started losing her hair,” Carrie said. “That was one of the tougher things for me to watch. I left it up to her to make the decision to get rid of the rest of it. She told me she was done with her hair – it was definitely tougher for me than it was for her.”

A New Way to Be a Family

Carrie says this experience has changed the lives of everyone in her family. She is more anxious and attentive whenever any of her daughters show signs of illness, and she misses the days when they could take family outings without worrying about cell counts or medications. Her oldest two daughters have taken on more responsibility than they ever would have had to before cancer, and the worry the girls have for Alizabeth breaks Carrie’s heart. But she says cancer has changed their lives for the better in some ways, too.

“It changed our outlook on life a lot. We do more together as a family now, and we spend more time reading books with the girls and tucking them in at night – it’s really different,” Carrie said. “We have become closer as a family. We definitely pray more and go to church more. There are a million things from before cancer that I wish we could have back, but we have little changes that I appreciate, too.”

Alizabeth has been in the maintenance phase of her treatment since November 2018, and her family is looking forward to May of 2020, which is when they estimate Alizabeth will finish treatment. Until then, they are appreciating the little spots of brightness and looking forward to more days spent together as a family.

“We’re taking things day by day and enjoying the little things,” Carrie said. “Cancer is something you never think you’ll have to go through, but when it happens to you, you just do your best to bring you and your family out the other side.”

Steven, 14

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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!”

Ling

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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!”

Zach, 18

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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, 11

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“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!”