A Daily Dose of DJ

Meet DJ, a Nebraska native who just turned five. DJ was born with Dandy-Walker and several other complications. His mother, Kelly, held him for just a few seconds before doctors whisked him off to the NICU. After 42 days and six surgeries, he was finally cleared to come home to his parents, right before Christmas 2017. 

In the years since, DJ has had an up and down journey. His lowest moments, such as a battle with pneumonia and RSV in 2020 that caused him to flatline a dozen times, make the high points, like him enjoying a family trip or reaching out to hold hands with his mom, all the more special. 

Kelly and her husband, David, had endured a stillbirth before DJ came along, so despite the day-to-day variability and the constant fears, they are beyond grateful for him. "We had so much loss before he came, and he's actually here now," Kelly said, adding "I just want to keep him around, I just want to give him everything I can give him."

Learn more about DJ's journey here.

The Dandy-Walker Alliance is committed to supporting families like DJ'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 DJ worldwide by selecting a donation amount below. 

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