Fifteen-year-old Jay Jay loves Fortnite video game and is the strongest person his mom has ever known. She recalls his many surgeries, how he advocates for himself and how he sets his mind to do things others say he will never do.
Born with a rare form of muscular dystrophy, doctors didn’t seem to know how to help him or his family navigate the complexities of a child with the unique illness. “The best thing they did was connect us to Rainbows,” said Julie, Jay Jay’s mother.
In the early years, Jay Jay got early intervention therapies, and his family got a team of Rainbows professionals to help walk through the ups and downs of his condition. Currently Rainbows provides Targeted Case Management services helping the family connect to resources and funding for things they need. “Our TCM is great,” says Julie. “Lynn helped us get a ramp so we can get Jay Jay’s wheelchair into our vehicle. They also helped with a stander, walker and other equipment to help him keep mobile through the years.”
Jay Jay is one of 7 children in the family home and often advocates for what he needs. Just last year, he proved he could take regular high school education classes. “Whatever he sets his mind to do, he will find a way,” said Julie. He is generally accepting of his illness and likes to be as self-sufficient as possible, often explaining his disability to others. In fact, Jay Jay would like to be a computer engineer when he goes to college.
