Meet Jonathan: A Children’s Hospital of Richmond at VCU Champion

When Jonathan was born, he was diagnosed with cleidocranial dysplasia. “We knew we would be lifelong Children’s Hospital of Richmond patients,” says Heather, Jonathan’s mother. “Because we trust them so much with our children’s health, that’s the first place we went when Jonathan was experiencing extreme dizzy spells, nausea and lost 20 pounds in a month.”

Jonathan, a Children’s Hospital of Richmond at
VCU champion, is participating in Family
Advocacy Day 2023.

Following a series of genetic testing, imaging procedures and appointments, Jonathan was diagnosed with juvenile Alexander disease at 12 years old. “We realized the journey wouldn't be easy, but we were and are willing to do whatever is needed to help maximize what Jonathan can do,” says Heather.

Pediatric specialists have provided essential care for Jonathan’s whole life. After his diagnosis of Alexander disease in 2020, he got a g-tube. He gets seven medications a day through it over the course of the entire day. He also started PT and OT every week. Throughout all these challenges and diagnoses, Jonathan was also developing severe kyphoscoliosis, or curvature of the spine. He spent four weeks in the hospital in halo gravity traction, then had spinal fusion surgery.

“The insurance we pay for through work is phenomenal but doesn't cover everything,” says Heather.

When Jonathan had scoliosis surgery last year, his Medicaid case worker recommended they switch from a regular Family Access to Medical Insurance Security Plan, Virginia’s health insurance for children, to CCC+ Medicaid to cover more specialty, long-term needs.

“Thankfully, they changed their policies for his medications though,” says Heather. “The majority of the medications he needs to survive (calcium, vitamin D, allergy, etc.) are over the counter and not covered. We are also waiting for home remodels so Jonathan can live on one level.”

Jonathan is doing great, for the most part. Because of his juvenile Alexander disease, his speech comes and goes. Overall, he's an intelligent, fun, hilarious kid. He also loves coloring, crafting and playing video games.

“He has said for many years that he wants to be a stand-up comedian when he grows up,” says Heather. “Or, if necessary, a sit-down comedian.”