April 1, 2013 at 8:59 AM ET
Caelon Arthur and his family are not giving up.
At just 4 years old, the North Carolina boy has suffered so many strokes in his short life that his doctors have lost count.
The cause is a mystery, and doctors are baffled.
Six of the strokes have been major; they have blinded him in his left eye, and weakened him on the right side. Caelon, who had his most recent stroke in February, has had to re-learn to walk several times.
“Every test we’ve done to try to identify a cause of stroke has come up normal,” Dr. Tim Gershon, a pediatric neurologist at the University of North Carolina School of Medicine, said on TODAY Monday.
Those tests have ruled out problems that can commonly cause strokes, including heart disease, a blood clot disorder, high blood pressure, a brain infection, sickle cell anemia and a narrowing of the blood vessels, Gershon said in an interview with TODAY.com.
“Strokes are rare in children and strokes with a pattern like this are incredibly rare,” Gershon said. “He’s probably the only child in the U.S. with this.”
Gershon said he's never heard of another patient like Caelon. “I’ve seen cases where people have recurrent strokes but we find abnormalities in their blood vessels,” he said. "I haven’t seen a case where they’ve had stroke after stroke after stroke and their blood vessels look normal.”
Gershon is provisionally treating Caelon for brain vasculitis, an extremely rare autoimmune disease of the brain blood vessels that disrupts the flow of blood through the vessels, which causes brain injuries.
“For some reason that we don’t know, the immune system attacks the brain blood vessels,” Gershon said. “It’s incalculably rare.”
Caelon is now receiving a three-month course of chemotherapy, Gershon said, “in an effort to deliberately weaken his immune system so it stops disrupting his brain blood vessels.”
If the cancer-fighting treatment helps, Gershon said he’ll continue it. If not, he’ll stop the medication and keep searching for an answer. “We’re going to re-evaluate every three months,” he said.
Strokes are rare in children, afflicting about 3 to 15 out of every 100,000 kids per year, Gershon said. But Caelon’s condition is even more unusual because he has suffered recurrent strokes all over his brain with no explanation, rather than in a specific blood vessel.
“Usually there are particular patterns that we see and his pattern has been no pattern,” Gershon said. “It happens all over the brain. If it’s a blood vessel problem, it’s a problem with all blood brain vessels.”
As doctors try to end Caelon’s strokes before they can any more damage, he is working on being a typical 4-year-old. Exploring a fire truck, he squeals with delight. “Oh yeah, yeah!” he shouts, playing with the steering wheel and flipping on the sirens.
“He laughs because he’s happy,” says his dad, Tony, an Army veteran and firefighter.
He and wife, Jennifer, see their little boy as an inspiration.
“There’s nothing about him that has the word 'quit' in it,” Tony Arthur says.
When asked what people could learn from their son, Jennifer says that “anything’s possible,” while Tony answered: “Never give up.”
A fundraising website set up for Caelon notes that the extensive testing and treatment he's been going through, along with the strokes themselves, have limited his ability to have a normal childhood. Even so, he’s a happy boy.
“Caelon has a smile on his face most all the time and the smile alone could melt the strongest of hearts,” says his page on GiveForward.com.