Carter - 31-Days of Awareness and Giving

Carter is our 17 year old son with Dandy-Walker. I had an uneventful pregnancy, other than a fluke run-in with a foul ball at a Red Sox/Orioles game in my second trimester. At Carter's 6-month well-visit, he wasn't meeting his milestones so we were sent for some testing. A few weeks later, after an MRI, Carter was diagnosed with Dandy-Walker Variant, which at the time we had never heard of. Carter is missing 10-20% of his cerebellum, and where he should have brain mass, he has fluid, causing global developmental delays. We immediately started PT and OT and wondered what the future would hold for Carter. At 11 months, Carter was diagnosed with failure to thrive, and a g-tube was surgically placed in his stomach. We continued with multiple therapies every week, adding in speech and feeding. When our second son, Oliver, was born Carter crawled (at 19.5 months) and when our third son, Crosby, was born, Carter walked (at age 3). Our main goal for Carter, all through the years, has been to keep him happy and healthy. Carter got 100% of his nutrition from his feeding tube from 11 months, until 2021, when we began to really focus on eating orally during Covid. One year later, in August of 2022, after almost 14 years, Carter had his feeding tube removed. He is now our best eater and we always joke that he is making up for lost time! Today, Carter is a sophomore in the autism classroom at our local high school, and next year, all three of our boys will be students there. Carter LOVES the weather (especially rain and storms) and every Monday he does a pre-recorded weather segment on the morning announcements at school. He plays unified sports at school; currently it's track season. Carter thrives on routine and likes to have things a certain, familiar way. We still don't know what the future holds for Carter, but we continue to afford him every opportunity we can, and keep him happy, healthy, safe and FED full of his favorite foods.

The Dandy-Walker Alliance is committed to supporting families like Carter's along their Dandy-Walker journeys, raising awareness in the medical community and beyond, and advancing research into its causes and potential new treatments. You can support kids like Carter worldwide by selecting a donation amount below. 

All money raised on this page goes toward helping families, raising awareness, and supporting research initiatives.