GASTON COUNTY, NC (WBTV) - This is an odd story. But it's real. A Gaston County mother asks you to read it because she says her two teen daughters – Cameron and Alden – are wholly misunderstood.
Cameron and Alden have an illness that makes it feel like razor blades every time air touches their skin. It's called Complex Regional Pain Syndrome (CRPS) and it affects them 24-hours a day, 7-days a week.
It's why in this picture 15-year-old Cameron Dennis is wearing long gloves with her blue formal gown. The long gloves kept air off her arms and hands.
"We've seen doctors in Texas, New Jersey, Philadelphia, Boston, Rhode Island, Duke, Chapel Hill and DC," says their mom, Anita. "There's just not much research out there to help my girls."
CRPS is classified as a rare disorder by the FDA but up to 200,000 people experience this condition in the United State alone, any given year.
Cameron and Alden live in Stanley. They say another teenager in Lincolnton lives with the same thing
Cameron enjoys theater, singing and dance. Her mom says she loves ballet but this year had to quit lessons because of chronic pain. She is bubbly, talkative and wants to become a child life specialist.
Alden, 17, takes college courses at Gaston College and volunteers at a therapeutic equine riding center for kids with disabilities called Victory Farm. She wants to grow up to be an animator.
"They have endured so much," Anita says. "We have tried MANY alternative treatments, some which have helped. But CRPS always finds its way back. We wish we could try CBD oils, but they're still illegal for chronic pain. No child or adult should have to live like this."
A film about this disease (produced by Bob Marley's nephew!) is going to be shown April 9th at 11:50 a.m. at the Charlotte Black Film Festival.
Bob Marley's sister suffers from CRPS as well.
The name of the film is Trial by Fire.
"My girls are fighters," says Anita. "But it's hard. They feel lonely. People understand cancer, but they don't often understand an invisible disease. They don't understand how you can look healthy but be so sick."
Think about that. It makes total sense.
"I really appreciate you sharing their story," said Anita. "They are my heroes. I love these two pictures I'm sending because even though they're in pain, the photos capture their beautiful souls."
Please keep us updated, Anita. Hopefully the movie will bring about a little more attention.
*Editor's note: This is about one of #MollysKids, children WBTV Anchor Molly Gr antham follows closely on her Facebook page. It was first published there – which is why it's written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story (and updates on all #MollysKids) here*