Senior Multimedia Reporter
radhica.sookraj@guardian.co.tt
Twelve-year-old Jaylon John dreams of walking again.
For nine years, he has been fighting a rare autoimmune disease—Juvenile Dermatomyositis (JDM)—that has robbed him of his strength, his health, and the carefree joys of childhood. Once able to run and play outside, Jaylon now spends most of his days in a wheelchair, often parked by the window, waiting to catch a glimpse of a passing car.
Speaking to Guardian Media, Jaylon shared his struggles.
“Every day I wake up, and there’s a new part of my body hurting,” he said softly.
He said the condition causes his immune system to attack his muscles and skin. His body is covered in painful rashes, and his muscles are so weak that the simplest movements can be exhausting or impossible. He said the itch never stops, but the pain is worse.
Wiping away tears, his mother, Shenelle Duncan-John, said it hurts her to see her son suffer.
“When he gets up some mornings, he looks at me and says, ‘Mommy, I’m tired. I can’t go on,” she sobbed, adding, “And it’s hard to hear that, because I know he wants to walk again. I just want a fighting chance for him.”
Shenelle said that when he was just two years old, Jaylon caught what seemed like a regular cold, but it never cleared up. She and her husband, Andrew John, tried everything—private doctors, over-the-counter medications—but nothing worked. Eventually, at a public hospital, a battery of tests revealed the truth. It was not a cold. It was JDM.
“He used to be up and down all the time, playing with a toy car,” Shenelle recalled. “But that Christmas, he didn’t want to play. He just lay down, tired all the time. That’s when we knew something was really wrong.”
The disease slowly eroded his muscles. Over time, he went from walking to shuffling to being completely dependent on a wheelchair. She said a recent surgery to treat complications had left him still recovering months later.
Even so, Jaylon tries to remain upbeat.
“I like to go out, I like to take pictures, and I like drawing cars,” he said. “And when I grow up, I want to be a paediatrician—to help other children like me.”
Shenelle said Jaylon’s care was expensive, and the resources at local hospitals were limited.
“A single therapy session costs between $400 and $450, and Jaylon requires multiple sessions each week: physical therapy, aqua therapy, and massages. On top of that is the cost of a gluten-free, anti-inflammatory diet to manage his symptoms,” she revealed. Her husband has tried to provide, but Shenelle said it is not always affordable.
“Most of our money goes to his care: therapy, medication, diet, transportation, everything.
After reading a medical book titled Myositis and You, Shenelle said she reached out to its author, Dr Lisa Rider, a US-based specialist. Her team recommended Duke Children’s Hospital in North Carolina as a treatment facility for Jaylon.
They’re now hoping to raise funds to get him there.
Anyone wanting to help Jaylon get treatment at Duke Hospital can donate to Shenelle Duncan RBC Chequing: 100006174356071 or call her at 868-725-5820.
