Jagger J, age 7

Photograph by Emily Barnes (2023)
Cheerful and good natured, Jagger is known to take everything in stride. He’s also willing to take on challenges with determination.
Jagger spent time in neonatal intensive care after his birth, and was seen by a dozen specialists at MUSC following his NICU stay. Eventually, he was diagnosed with a very rare genetic condition. His family has only been able to find two other children in the world who have the same condition—and one of them lives in Austraila!
Jagger was on oxygen for the first three years of his life, required a feeding tube, and wore casts up to his thigh on both legs, followed by braces for his legs. Today he requires a wheelchair and is non-verbal. His mom, Jamie, says he is always in a good mood, even when things are difficult. She smiles with pride when she recalls his accomplishments—sitting up on his own at age three, standing up by himself with the help of a chair, and most recently riding a bicycle in therapy.

“Even though Jagger is non-verbal, he can still communicate!” says Jamie. “His eyes speak volumes of how he feels and how he sees the world.”

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.