Jonathan A, age 17

Photograph by Ryan Burgee (2024)

A teenage boy who reminds his family how profoundly important life is, Jonathan has a smile and presence that lights up every room he enters. He interacts with people of all ages in his own distinct way.
Jonathan is diagnosed with Pitt Hopkins syndrome, a rare genetic disorder. His family began to navigate a new world that they were not expecting. While attending music therapy sessions, Jonatha’s music therapist noticed facial features that led his parents to do research that eventually helped them seek a diagnosis. It took six and a half years to reach the final diagnosis, but his parents never stopped seeking answers for him.
This young man loves the outdoors, especially his own personal swing. His love of boats and golf carts makes him wish he was on every one he sees. Music is another favorite, especially if someone is clapping along.
“Jonathan understands more than people give him credit for knowing. He is a deserving individual just like any other, no matter his differences,” his mom said. “If you take time to get to know Jonathan, you will be amazed at what he can teach you.”

Family Connection of South Carolina provides services and resources to families who have a child with a disability or specialized healthcare need. Since 1990 we have served more than 100,000 families and today our services are needed more than ever. We focus on parent-to-parent support, guidance with navigating the complex healthcare system, and assistance with school meetings and special education plans.