Team Wally Inspires During Fragile X Awareness Month

To recognize Fragile X Awareness Month in July, Global Genes reached out to National Fragile X Foundation, a patient advocacy organization that supports those affected by Fragile X syndrome. Erich, Lexie and Claudia Schutz shared their story with Global Genes:

Wallace “Wally” Schutz arrived in August 2019. He was an easy-going baby, a great sleeper with a big round bald head and sweet little smile. He spent the next two years in a COVID-19 Pandemic “bubble”, so his slower development didn’t initially seem unreasonable.

At his two-year checkup, his pediatrician was concerned Wally was not reaching typical developmental milestones. He was referred for genetic testing and to specialists at nearby Boston Children’s Hospital. After much back and forth with insurance and nearly one year later, we learned that Wally was born with Fragile X syndrome on a Zoom meeting in July 2022, one month before his 3rd birthday.

Our hearts were all pretty heavy that day, the realization of what life might be like for Wally was pretty devastating. But with 3-year-old Wally and 1-year-old sister Winnie at home, there wasn’t any time for heartache, sadness, or dwelling.

Enter #teamwally — the force of family and friends behind Wally. With help from the National Fragile X Foundation, we read everything we could, signed up for newsletters, and watched webinars. We got as smart as we could as fast as we could. With only one month before the new school year, there were lots of loose ends that needed to be tied up to make sure Wally would get the services and care he needed. #teamwally sprang into action and within six weeks we were able to get Wally assessed and placed into the right programs and daycare. And he did it!

Wally enrolled in a clinical trial, and it was amazing to see the difference he made during that time. We are now on the open label portion of the trial and continue to see progress. We recommend everyone try participating in research; it makes a difference!

We share our story in the hope that we can educate so many more people to understand what Fragile X Syndrome is, to raise both funds and awareness. The National Fragile X Foundation has become very important to us because it helps support families affected by Fragile X and FMR1-associated conditions every day, by promoting advocacy, providing education, advancing research, and improving treatments. In addition, Fragile X research benefits other conditions such as Alzheimer’s Disease, Parkinson’s Disease, Down Syndrome, Autism, and more.

If not for the National Fragile X Foundation, we would never have been exposed to a treatment for Wally that has so positively changed our family’s life.

While life with Wally is not that of a typical 4-year-old, he remains the cutest, funniest, and sweetest little boy you could ever meet. We are truly blessed to have the support and access to all the good things that could help change this little boy’s future. Now we want to help other families and their children have the same opportunities.