Jessica Campbell lives with her son Javon,13, daughter Janessa, 9, her significant other, Earl, and family dog who they love dearly in Hendersonville, NC. Javon’s a gamer and interested in graphic design and Janessa is an animal-lover. At eight years old, Javon was diagnosed with Duchenne. While Javon’s diagnosis was overwhelming, Jessica and the rest of her family do not allow Duchenne does not dominate their lives. “We’re a normal family outside of DMD,” says Jessica.
Jessica and her family were in need of safer transportation for Javon. Their van at the time required Jessica or Earl to lift Javon into his seat, then manually load his heavy wheelchair into the back of the car. While online, Jessica discovered Jett Giving Fund after she joined a DMD moms Facebook group. “They were talking about Jett Foundation and how somebody had got assistance with getting a van through Jett Giving Fund.”
Javon needed safer transportation beyond venturing out to necessary medical appointments. “I decided to check it out and when it popped back up again the day before the deadline, I finally submitted it,” says Jessica. “The week of Christmas, I found out we were one of the chosen ones.”
The excitement to start planning their fundraisers was hit with a curveball due to the unforeseen: the global pandemic.
“We were going to do all these fundraisers, because that’s what I do for a living. We knew we could do this. Then COVID hit!” says Jessica.
With the help of their community, they were able to raise half of the funds needed for their accessible van through an online raffling off a luxury pocketbook and with donations from their local community online.
The best part about receiving their new accessible van is it’s safe and they no longer need to lift Javon into the van themselves. Javon and Janessa have fun riding around town and getting ice cream. In the future, they’d love to travel, either to a cabin or to the beach.
Since her experience with Jett Giving Fund, Jessica and her family have also happily participated in Jett Foundation programs this year. Javon had a blast during his week with Camp Promise Connect, Camp Promise’s virtual week of camp with activities and materials delivered straight to campers’ homes. This was Javon’s first-ever camp experience.
“He’s a passive child, he’s able to sit back and listen but he’s more of a typer,” says Jessica. Javon enjoyed the activities and virtually interacting with other kids. His favorite part of “Camp Promise-in-a-Box” was meeting a mentalist.
For Jessica, taking part in Jett Foundation’s Porch Nite became a welcoming, relatable space full of information that comes from direct experience.
“It’s coming straight from a grandmother, a mother, an aunt, a sister,” says Jessica. “It’s coming from somebody who’s living the thing you’re living. And you’re learning from each other. I was very hesitant, it was very hard to accept. This would’ve helped me so much earlier on, and we would’ve found the best care.”
As a way to give back, Jessica decided to participate in the virtual Jett Ride this past July. Her goal was not only to pay it forward, but to also raise awareness for Jett Foundation and families caring for loved ones with Duchenne.
It’s not Javon with muscular dystrophy. It’s Javon, a 13-year-old gamer and graphic designer, who happens to have Duchenne.— Hope K.
“Of course Javon’s huge a motivator, but it’s also wanting to pour back into a foundation that’s poured into us,” says Jessica. “They didn’t have to choose us. There are so many families in the same situation and if we have the opportunity to give back, even if it’s raising awareness and getting a little bit of money in, then Jett Foundation and another family can benefit from that.”
To Jessica and her family, being “Stronger than Duchenne” means Duchenne cannot stop you from living your life.
“We try to have fun!“ says Jessica. “It doesn’t run us. It’s not Javon with muscular dystrophy. It’s Javon, a 13-year-old gamer and graphic designer, who happens to have Duchenne.”
For individuals or families taking care of loved ones within the Duchenne community, to fight Duchenne together, Jessica shares it takes all of us to get through each day.
“Keep living your life, and let people in. Get out of your comfort zone” says Jessica. “Keep the people in your life that want to help. Don’t be afraid to bug your doctor and be an advocate for your child. Continue to live your life.”