Mystery ailment plagues Canadian 'bubble boy' toddler

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Wednesday, January 27, 2016
Mystery ailment plagues Canadian 'Bubble boy' toddler
Lauren Glassberg has the details

EDMONTON, CANADA (WABC) -- A Canadian toddler is at the center of a frustrating medical mystery, and after exhausting all their options, his family and the medical community are now appealing to experts in the United States for help.

Like any other toddler, Deagan Clavette is constantly exploring his surroundings. But his world is small

"He's basically a bubble boy," mom Jennifer Tregidgo-Clavette said. "Allergic to life."

The Stollery Children's Hospital in Edmonton has been Deagan's home for 15 months, and simply leaving his room requires a life-saving kit. His mother must be ready to resuscitate him should he be unable to breathe.

Deagan's been diagnosed with dozens of allergies, but it's his unknown spontaneous reactions that baffle his doctors.

The toddler has lost consciousness and even gone into shock on occasion.

"He's had seven EpiPens in 24-hour span," his mother said. "Deagan will not survive without a diagnosis."

Experts across Canada now say there's nothing more they can do. His doctors say it's not allergic, rather it's another type of reaction that they can't pinpoint.

Deagan has been treated for a rare mast cell disease, which has helped a bit. But he still struggles.

His doctors are now calling on the National Institute of Health, which specializes in the discovery of new diseases, for help.

Deagan's family hopes to hear from the institute this week, as they struggle to pay for his treatment, and they have set up a GoFundMe campaign to help with their existing bills.

It is support that's even more critical as Deagan's father's expects to be laid off in a matter of weeks.

"Pray to God something comes out of this," Tregidgo-Clavette says.

She and her husband hope they can figure out how Deagan can live a normal life.