Nolan Staples is a typical 14-year-old. He likes to hang out at the mall, catch a movie with friends and play basketball and PS4.
But unlike many kids his age, he can't stand on his own. He was diagnosed with Duchenne muscular dystrophy when he was 2. The disease weakens skeletal and cardiac muscles, and those with DMD often need a wheelchair by their teenage years. Duchenne has no cure and affects one in 3,500 live male births and some females.
Nolan Staples wheels into his family's new van. His mother, Misty Swafford, was recenly diagnosed with breast cancer and told to avoid heavy lifting, making a wheelchair-accessible van a must.Every morning, Nolan's mom, Misty Swafford, helps him get into his wheelchair to get ready for school. When it's time to leave, the process of helping Nolan into the minivan can take up to 30 minutes, and the routine is physically strenuous on Swafford.
"I have to transfer him out of the chair and into the van," she said. "Then I take the chair and pull it around back and strap it into the trailer. If it's raining, we're getting wet. If it's freezing, we're freezing."
In November of last year, Swafford decided things had to change. Online research led her to the Massachusetts-based Jett Foundation, a nonprofit organization that raises awareness for muscular dystrophy and helps families purchase necessary equipment.
"I know from personal experience that vans, scooters, rotating hospital beds and stair lifts are vital to improving the quality of life of someone with Duchenne. I also know how incredibly expensive that equipment is, and how little health insurance actually covers," foundation founder Christine McSherry, who has a 22-year-old with Duchenne, said in a statement. "We started Jett Giving Fund to try to make life-changing equipment just a little more obtainable for individuals affected by Duchenne."
Swafford applied to the foundation for financial assistance to buy a wheelchair-accessible van.
Shortly after, she was diagnosed with breast cancer and her doctors instructed her to avoid any heavy lifting. The family needed the new van more than ever. She enlisted her daughter Ciara, a freshman in college, to help with the morning routine, but she still worried about taking her son to school and appointments.
With help from the family's FirstGiving fundraising page and the Chattanooga Civitan Children's Foundation, Swafford managed to raise the $17,500 needed for the family's portion, with the Jett Foundation covering the other half of the $35,000 cost.
On Feb. 1, Nolan and his family received their new van. The morning routine that used to take 30 minutes now only takes five.
"The van that they've provided has been life. It's been everything," said Swafford. "After the van, all I have to do is lower the ramp, he wheels in, I strap him down and we can go."
To learn more about the Jett Giving Fund, visit jettfoundation.org/jett-giving-fund.
Email Kaitlin Colon at kcolon@timesfreepress.com.