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.