By Amanda Castro
GORDON, Georgia (41NBC/WMGT) – As we countdown the days until Christmas, one Middle Georgia boy isn’t asking Santa for toys, but instead a miracle. He is battling a rare and deadly genetic disease called cystinosis.
Under the glow of the Christmas tree, eight-year-old Camden Sanders is looking for a special gift.
“What are you looking for under that tree?” 41NBC asked. “A cure!” Camden answered.
A cure for cystinosis. He was diagnosed four years ago. According to the Cystinosis Research Foundation, only 500 people, mostly kids, are diagnosed in the U.S. The amino acid, cystine, crystalizes and builds up in his cells until they are destroyed. It’s a disease that effects his entire body.
“It effects their eyes, their heart, their muscles, their bones, their kidneys,” Camden’s grandmother Marie Sanders said.
It even effects his size. Camden’s five-year-old brother Colin towers over his tiny frame. His grandmother says Camden takes more than 400 pills and half a gallon of liquid medicine through his stomach tube a month.
“Do you have more good days or tired days?” 41NBC asked. “Tired days,” Camden answered. “What makes you so tired?” “That medicine, the medicine makes me tired.”
But this only prolongs his life. There is no cure.
“I had rather do this battle for Camden if I could,” Marie Sanders said.
It’s a battle she can’t fight alone. She is calling on you to “Help Camden Find a Cure.” Through the non-profit, Marie hopes to raise money and awareness for cystinosis.
“These kids need our help, they really need our help,” she said.
Despite the disease, Camden takes his illness in stride.
“Are you scared?” 41NBC asked. “I’m scared of the dark,” Camden answered.
Camden is already in Stage 3 of kidney failure. His grandmother is hoping they can wait till he gets a little older before he has to have a kidney transplant.
“Help Camden Find a Cure” is holding a magic show fundraiser this weekend to raise money for cystinosis research. The show is Saturday, December 7 at the Plaza Arts Center in Eatonton. Tickets are $15 and doors open at 6 p.m.
Source: NBC News