Thursday 24 Apr 2014

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STORIES FROM THE HEART: 5-year-old with rare stroke issue ‘doesn’t know anything else than to smile’

Published: 8:46 am CDT, November 14, 2013

Caelon Arthur was 20 months old when he had his first stroke. His screams awakened his parents in the middle of the night, but it was only in the morning that they discovered he couldn’t walk normally or use his right side. Doctors told the family he had a small stroke where his brain connects to his brain stem.

Five days later, the toddler was walking and things seemed back to normal.

Three months later, he had another stroke. That was three weeks after his neurologist said he would probably never have another stroke.

Another stroke followed a few months later.

Frustrated and wanting answers, the family decided to seek another opinion. An MRI revealed Caelon had also suffered several so-called “silent” strokes.

“We stayed worried,” said Tony Arthur, a firefighter near Raleigh, N.C., and a retired Army veteran.

A year later, Caelon had his fourth major stroke. It affected his right side and turned his left eye so that he gazed to the left. He had a fifth stroke last December and his sixth in March. Caelon has had to relearn to walk four times.

“The sixth stroke, I guess, was the final straw,” Tony said. “If affected the right side of his body, his ability to swallow was affected for a while, and it took the sight from his left eye.”

***

Tony turned to the media for help. He’d grown tired of doctors telling him the tests they had run had come back normal, and they couldn’t figure out why Caelon kept having strokes.

“Some doctor somewhere will know something,” Tony figured, “and that’s what happened.”

Caelon’s story first aired on a local TV station, but when it made the “Today” show, scientists from the National Institutes of Health in Maryland saw it online. They contacted Caelon’s neurologist, who excitedly called the family. The NIH doctors had been studying four other children with multiple strokes.

“You could pretty much stack their MRI images one on top of another and see the exact same findings,” Dr. Amanda Ombrello told the “Today” show.

The family went to Maryland for testing, and doctors found Caelon had an extremely rare genetic protein deficiency in his blood. Both Tony and his wife, Jennifer, had mutated genes that doctors believe combined to create the “perfect storm.”

In July, Caelon traveled to Maryland and was given fresh frozen plasma to introduce the protein back into his body.

Since it is a new procedure, doctors aren’t sure how long the plasma will stay in Caelon’s system or how often it needs to be administered. He also takes daily blood pressure medicine and a bevy of other medications.

For now, the family has hope.

“I couldn’t be more happy,” Tony said, adding that since the procedure, Caelon hasn’t had any stroke activity.

***

Caelon’s family is sharing its story to help spread awareness about strokes in children since the condition is often associated with the elderly. The incidence of stroke in U.S. children age birth to 15 years is estimated at 6.4 out of 100,000.

In North Carolina, Jennifer worked with the governor’s office to get May designated as Pediatric Stroke Awareness Month.  The family also maintains a Facebook page, Caring for Caelon, to keep people updated on their son’s progress. So far, the page has more than 12,200 likes.

Tony cautions people not to overlook symptoms “because of the mindset that kids don’t have strokes.”

As with adults, speedy diagnosis, treatment and age-appropriate rehabilitation and therapy can minimize death and disability. The American Stroke Association urges people to learn to spot a stroke F.A.S.T. – that is, the warning signs are (F)ace drooping, (A)rm weakness and (S)peech difficulty, and seeing any of those means it’s (T)ime to call 9-1-1.

***

Tony struggles knowing what his son has endured. The whole experience has been quite an ordeal, but even just the fact-finding has been difficult – a brain biopsy, countless blood drawings, test after test.

“We did all this, and he just ended up needing a simple blood test,” Tony said. “But we didn’t know that at the time.”

Through it all, Caelon, now 5, has been a trouper.

“He is a very happy, very fun-loving, never-say-quit type of boy,” Tony said. “He keeps going. He doesn’t know anything else than to smile.”

In fact, Caelon was able to comfort Tony when he was feeling sad because of Caelon’s loss of sight.

“I was crying, and he said, ‘Dad, what’s wrong?’ I said, ‘I’m just sad you’re blind in your left eye.’ And he said, ‘That’s OK.  I’ve got another one.’

“It warms your heart. That’s the kind of person he is.”

***

Do you know a “Story from the Heart” we should tell? 

Send an email to stories@heart.org that’s as brief or as detailed as you’d like.

Previous “Stories from the Heart” include:

She overcame a stroke; her sister didn’t, stoking her passion to educate others

Rapper’s wife urges empowerment through fitness, knowledge about stroke

Survivor says Affordable Care Act may have saved her life