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A Cure for Caelon: Rolesville boy diagnosed after 4 years of questions

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Caelon and his father Tony at a doctor's office visit. (Caring for Caelon) Caelon and his father Tony at a doctor's office visit. (Caring for Caelon)
Caelon wears a Rolesville Fire Fighter outfit, Caelon wears a Rolesville Fire Fighter outfit,
BETHESDA, Md. -

After a doctor at the National Institute of Health happened to read about a Rolesville boy who suffered from recurring strokes, the boy's family's four-year search for answers may finally be coming to a close.

Just after he was 20 months old, Caelon Arthur had his first major stroke, and then another at 24 months and another at 34, and then three more after that. He's undergone a brain biopsy, a temporal lobe biopsy, had numerous silent strokes, had to relearn to walk a few times and his latest stroke left him blind in his left eye.

Yet Caelon's condition is so rare, doctors were baffled. That is until Dr. Ivona Aksentijevich, with the National Institute of Health, found Caelon's story while browsing the Web.

"This is our child, and we'll go to the ends of the earth to make him better. To give him a quality of life he deserves," Caelon's father, Anthony Derek Arthur, said. "We searched three years for an answer and now we have something -- something concrete rather than a theory."

Aksentijevich read the story on the NBC Today Show website, which picked it up after WNCN reported on Caelon's condition in March.

She recalled, "This was just like an incredible coincidence. If it was not for this news article, we would have missed this patient, and you know it was very exciting."

Aksentijevich says she's been looking for someone exactly like Caelon for the last six months. After reading about his seizures, she reached out to his family and brought them to Bethesda to run tests on Caelon.

"What we wanted to see is really whether he had the same mutation in the same gene in the other four patients we identified thus far," Aksentijevich said.

Just 24 hours after running the tests, the Arthurs had the answer for which they'd been searching for nearly five years. Caelon's father said he was in disbelief when he heard the results.

"How could it be this easy when they've been looking for three years?" he asked.

There are 20 NIH doctors working on Caelon's case, going over his medical history and brainstorming how to treat him. In fact, Caelon's condition is so rare that it does not have a name.

But he is not alone.

"They lack certain protein, so we're trying to supplement this protein in some form, but it's not going to be easy," Aksentijevich said of the condition. "At least we now have a clue where to go and what to do with these children."

"Now we can focus and basically develop treatment for these patients."

That treatment is uncharted territory. A custom therapy specific to this rare disorder is currently being vetted by the FDA, and if it's approved, doctors say its effectiveness is a toss-up.

Eileen Park

Eileen joined WNCN after years of working as a foreign correspondent. During her time off, she enjoys relaxing with her dogs, reading, and exploring the Triangle. More>>

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