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‘Bubble boy’ toddler with mystery illness confined to hospital room baffles doctors

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Deagan is suffering from a mystery disease that leaves him confined to his room in a hospital. (Deagan's family's GoFundMe page)

Deagan is suffering from a mystery disease that leaves him confined to his room in a hospital. (Deagan’s family’s GoFundMe page)

In many ways, Deagan Clavette is a typical toddler. He’s constantly exploring his surroundings, but his world is small.

“He’s basically a bubble boy allergic to life,” Jennifer Tregidgo-Clavette, Deagan’s mother, told CBC News.

The Stollery Children’s Hospital in Edmonton has been Deagan’s home for 15 months.

Simply leaving his room requires a life-saving kit.

“Rescusitation, like baggers in case of I do have to breathe for him,” Tregidgo-Clavette said.

Deagan’s been diagnosed with dozens of allergies. However, it’s his unknown spontaneous reactions, such as losing consciousness and even going into shock, that’s perplexing doctors.

“He’s had seven epi pens in 24-hour span,” Tregidgo-Clavette said. “Deagan will not survive without a diagnoses.”

Deagan was born at Yellowknife’s Stanton Territorial Hospital. At 5 days old he stopped breathing and at 7 months he nearly died from a severe allergic reaction.

He needed specialists his region couldn’t offer. Now those specialists in Edmonton and experts across the country say there’s nothing more they can do.”

“It’s not allergic,” Dr. Isabelle Chapados, pediatric endocinologist said. “It’s another type of reaction that we have never been able to pinpoint.”

Doctors have been treating him for a rare mast cell disease. It’s helped a bit, but nothing’s been confirmed.

The next logical step: calling on the National Institute of Health in the United States for help.

“They are specialized in the weird and wonderful things (edit) they are there to discover new diseases,” Chapados said.

The family tries to keep busy. They’re hoping for a conference call with the NIH as well as information on who will pay for his treatment this week.

A GoFundMe campaign is helping with their existing bills — support that’s even more critical as Deagan’s father is being laid off from the Snap Lake Diamond Mine in a matter of weeks.

“Pray to god something comes out of this and we figure out how to live a normal life,” Tregidgo-Clavette said.


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