Meet John Ryan: A Children’s Specialized Hospital Champion

John Ryan’s pediatrician suspected something was wrong when John was five months old. He had difficulty holding his head up and his head was larger than normal for his age. An ultrasound revealed that he had macrocephaly that caused low muscle tone.

John Ryan, a Children’s Specialized Hospital
champion, is participating in Family Advocacy
Day 2023.

“This is when we began therapy at Children's Specialized,” says Emeline, John Ryan’s mother. “After a few months of intensive therapy, John Ryan was still very delayed.”

Genetic testing showed John Ryan had GATAD2B, a rare genetic neurodevelopmental disorder. “We were very scared because of the little information we received about the diagnosis,” says Emeline. “However, we remained positive and knew however hard the road ahead was we would be in this together.”

With a formal diagnosis, therapists and specialists at Children’s Specialized Hospital (CSH), they were able to guide Emeline and Joao, John Ryan’s father, through the beginning stages of his care.

“Working with CSH has made all the differences in our lives, especially for the development of John Ryan,” says Emeline. “We have the best team to guide us and help him be his best self.”

John Ryan has to be followed by his neurologist due to developmental delays and has continuous therapy appointments. “Our diagnosis does not have a cure,” says Emeline. “We are more focused on strengthening his core and muscle tone so he can be more mobile.”

Medicaid provides the full support and care for all of John Ryan’s treatment needs at the hospital, and equipment, as well as early intervention at home.

John Ryan is currently learning to use his gait trainer which will help him walk independently. He can crawl and sit independently but is nonverbal. His favorite activity right now is swimming.