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Bailey Williams

Bailey Williams is an amazing thirteen-year-old. She loves school and is truly a social butterfly, always making new friends. She loves to play adaptive baseball for the Twin Ports Miracle League, cheering on the Minnesota Twins, and getting high fives from her favorite mascot, TC Bear. She also enjoys adaptive water skiing, riding her adaptive bicycle, watching football, and participating in Camp Gillette.

She has been a patient at Gillette Children’s for much of her life and has already done many things many thought she would never be able to do.

Delays Lacking a Diagnosis

Bailey’s mother, Amanda Fudally will tell you that when Bailey’s medical journey began almost the moment she was born.

“Bailey was in the NICU two days after she was born. She was having issues losing breath when she was nursing, along with hip dysplasia,” Amanda says. “Every single day our doctors were trying to figure things out. Many tests were run and everything kept coming back negative. We needed to know what the next step was.”

As Bailey continued to experience delays throughout her development, at the age of 4 Amanda was referred to Gillette Children’s to see a genetic counselor.

“We were trying to see if we could pinpoint a diagnosis for Bailey,” Amanda says. 

Bailey and her parents all were tested. What the tests revealed was that Bailey had a rare genetic condition called Wieacker-Wolff syndrome. This condition has a variety of symptoms that effect the muscles, tendons, joints and other parts of the body.

“Where do we go from here?”

Amanda says that there is some form of relief in receiving a diagnosis, but once you have it there are still many questions about the future.

“Bailey has a rare condition. There’s not a lot of research or information about it. Even the genetic doctor’s today,” Amanda says. “That’s where Gillette comes in and what they do best, they work with you to help your child move forward.”

A Bright Future

When asked what her hopes are for Bailey’s future, Amanda answers, “We want her to continue to lead by example and continue to advocate for herself and others as she does. She is a leader and positive role model as she has the “I can do it” attitude, and if she can’t, she is determined to find a way she can so she can help not only herself, but others.”

Bailey is looking forward to continuing to play adaptive baseball and play on the Miracle League All Star Team again – and she might even be interested in a career as a sports announcer someday. Her care is ongoing and though there may be challenges yet to come, her family is grateful for the impact the providers at Gillette have made in their lives.

“I think like a lot of the families at Gillette, we’re not always sure what tomorrow’s going to bring. Gillette helps you through that process one step at a time,” Amanda says. “Our favorite thing is that it’s not just about the medicine. The staff there get to know you and very often greet you by name when you arrive. They also teach you how to find your own voice in advocating for your child and empower you to do so. Our providers at Gillette have made so many things that would’ve been unfamiliar, feel like home. They’re like family to us and will be for a long time to come.”