Our grandson Wallace David Schutz was born on August 10, 2019. Imagine the excitement we felt getting that early morning call from Erich: “I have a son!” We were so relieved to hear that both Wally and his mom were doing well. As our first grandchild, we did all the normal things loving grandparents do, even though, the first two years brought the challenges of COVID, including watching Wally’s slower than usual developmental growth, but always cherishing his smiles, cuddles and infectious laugh.
Just before his third birthday in July 2022, we received the test results: Wally was born with a genetic mutation that causes Fragile X syndrome (FXS), a rare condition that significantly affects intellectual, behavioral, and social development."
Hearing an official diagnosis from Boston Children’s Hospital didn’t make it easier. Our hearts ached for Erich, Lexie, and their now 1-year-old daughter, Winnie. We were all sad, confused, scared, worried and every other emotion that one experiences when unexpected news changes the entire trajectory of the life you planned for yourself, your children and their family.
As Poppi Schutz always said “the Schutzes don’t quit”, so we jumped into action forming #teamwally committed to help this little guy live his best life. He was still our sweet, loving grandson with platinum blond hair and bright blue eyes.
Wally turns 6 years old this August and in the past three years some amazing things have happened. In February 2023, Wally started the Zynerba Zygel CBD trial, and we saw immediate, positive changes to his eye contact, anxiety levels, which in turn improved his family dynamic and day to day experiences navigating the world. He has been fortunate to continue this drug past the trial. Last fall, Wally started a substantially separated public kindergarten. We worried about his ability to transition to full day school. As always, Wally impressed us with his resilience. He loves looking for the bus outside the house in the morning, happily climbs onboard, and spends his days learning and playing alongside classmates he now proudly calls ‘friends.’ His most recent progress report highlights the strides he has made since last September which include making verbal requests, putting away his backpack and coat, and improving his ability to sit and listen during story time. In no uncertain terms, Wally is crushing it. (and has finally learned to "high five") and as his four-year-old sister recently remarked, "Wally is learning to find his voice".
We believe these things would not have been possible for Wally if it wasn't for all the work and support done before he was even born. We express our heartfelt thanks to the FRAXA Research Foundation, Michael Tranfaglia, MD, Katie Clapp, MS, and all the patients, parents, partners, practitioners, and people touched daily by Fragile X.
Together we have only one remaining wish in our lifetimes and ever after; a cure for Fragile X syndrome and the best lives for both our grandchildren.
Love, Gramma and Pa (Claudia & Dave Schutz)
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