4-Year-Old From South Africa Comes To LA To Beat Rare Disease
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LOS ANGELES (CBSLA.com) — Ryan Carneson was told it would be “kinder to put [son Reef] on a morphine drip and let him die.”
The four-year-old from South Africa has already beaten the odds.
His dad said, “They said ‘Let him go peacefully.’ He wasn’t supposed to survive a week.”
At five months, Reed was diagnosed with a rare form of leukemia.
He became South Africa’s youngest bone marrow transplant survivor at the time.
Months later, Reef contracted another rare disease: GVHD — “Grafts vs. Host Disease. The disease is a killer. You can die from it,” says Reef’s mom, Lydia. He was going blind, deaf and his skin elasticity severely affected.
“We were desperate. We had beaten cancer and now we’re dealing with GVHD,” said Lydia.
The family moved to Los Angeles. Children’s Hospital Los Angeles has done a lot of work with GVHD patients.
“When we first came here, Reef was tube fed. He could not walk, he could not talk,” recalls Ryan. “He sat in a stroller and just watched DVDs all day long.”
A year-and-a-half after treatment, Reef is running around, climbing and expanding his vocabulary. His parents are hoping he will progress to the point he can go to school with other kids and lead a normal life.
Of course, the medicines and treatment aren’t cheap. Ryan is in school so they can stay on a student visa — but they are unable to work.
In addition to donations, the Carnesons are urging everyone to consider becoming bone marrow donors. Ryan also believes his son is proof positive, “to never give up hope.”
For more information on how to help the family, click here.