ROANOKE, Va. – Growing up as a kid, Carlito Jacobus often would stay home with his mom while his siblings would be able to go out and about.
Jacobus lives with Duchenne muscular dystrophy (DMD). It’s a genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact.
Whenever Jacobus would need to go somewhere, his mom would have a whole process to get him from point A to point B.
“I would have to pull his chair up to the side of the car. Then I would have to lift him up into the car and then break his chair all the way down. That’s just to get him into the car,” Darnita Wilson said.
Wilson would stay home with her son and would end up missing some of her other kids’ games and activities.
“With having four kids and school and work and things like that … you feel like a failure when you can’t provide for your kid and you know you’re kid has it. You feel like a failure,” Wilson said.
Carlito does not see his mom as a failure. He said she means everything to him.
“We may yell at each other or argue with each other for whatever reason, but we still love each other, and she still cares. I’m glad that I have someone that cares,” Jacobus said.
He has much more than just his mom that cares. Last year, the community started fundraising to be able to get his family a new accessible van so Carlito would not have to stay home anymore.
The family found the Jett Foundation, a non-profit that focuses on direct service programming for families impacted by Duchenne and other neuromuscular disorders.
Through what the organization calls the giving fund, the Jett Foundation is able to match donations to help families purchase resources that are more expensive. Nicki Benfield with the Jett Foundation was able to give Carlito and his family a new accessible van.
“A lot of this vital equipment is just unaffordable and insurance doesn’t help with assistance in purchasing this equipment. So what the Jett Foundation does is we come in with the Jett giving fund and we match the family’s fundraising efforts,” Benfield said.
The Jett Foundation tries to do ten van deliveries throughout the year. The Jacobus family fan was provided by Purple Ribbon Mobility, an organization that specializes in making accessible vans.
Jacobus and his family will no longer miss another game or activity. One of the first things they did was go eat out.
“You don’t let DMD stop you. You don’t let DMD become you. You are your own self with or without DMD. Just keep going. I’m sure you’ll get wherever you’re trying to go,” Jacobus said.
Dinner as a family is just the first of many memories to come.
“Memories … memories … I want to be able to have memories with them and experience memories. That’s something we can do and that’s what the van is able to do,” Wilson said.