Walker's Skeletal Dysplasia Journey

“I wouldn’t want to be anywhere else!”

— Aaron, Father 

Walker's Story

Heartbreaking News for First-Time Parents

At a 19-week ultrasound, Sydney and Aaron learned that something was not right with their unborn baby. Further testing showed that their child had a form of skeletal dysplasia that was expected to threaten their baby's life. 

On November 3, 2020, baby boy Walker entered the world and was placed in hospice care. The family prayed and waited, expecting their baby to pass within the hour. But it wasn’t to be. Miraculously, five days later Walker went home and, ever so slowly, began to thrive. Surprised, but elated, Walker’s parents had lots of questions and no answers. 

Patient story about Walker's skeletal dysplasia journey.

Finding Top Skeletal Dysplasia Care Halfway Across the Country

A Facebook post connected Sydney and Aaron with Nemours Children’s Skeletal Dysplasia Nurse Navigator, Mary Ellen Little, whose first evaulation of Walker found that his feeding challenges were due in part to a cleft palate. She suggested a special nipple made for babies with cleft palate. Immediately, Walker’s feeding improved. In a meeting she arranged with Nemours genetics expert Michael Bober, MD, PhD, Walker was officially diagnosed with diastrophic dysplasia, a rare, life-limiting condition that would require occasional medical and surgical interventions, but was manageable — and Walker could live a full life.

Now, the family is in the process of moving all the way from Texas to be closer to the Nemours Skeletal Dysplasia Team in Delaware. There, they will provide all the care Walker needs from infancy into adulthood.