‘Bubble Baby’ considered medical mystery

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EDMONTON, ALBERTA - A Canadian toddler is at the center of a frustrating medical mystery.

After exhausting all their options, his family and the medical community are now appealing to experts in the United States for help.

Kate Kyle reports from Edmonton.

In many ways Deagan Clavette is a typical toddler.

Constantly exploring his surroundings.

But his world is small.

(Jennifer Tregidgo-Clavette/ Mother): "He's basically a bubble boy allergic to life."

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

Simply leaving his room requires a life saving kit.

(Jennifer Tregidgo-Clavette/ Mother): "Rescusitation, like baggers in case of I do have to breathe for him."

Deagan's been diagnosed with dozens of allergies.

But it's his unknown spontaneous reactions - such as losing consciousness and even going into shock, that's perplexing doctors.

(Jennifer Tregidgo-Clavette/ Mother): "He's had seven epi pens in 24-hour span. Deagan will not survive without a diagnoses."

(Kate Kyle/ Reporting): "Deagan was born here at Yellowknife's Stanton Territorial Hospital. At 5 days old he stopped breathing. At 7-months he nearly died from a severe allergic reaction. He needed specialists the North couldn't offer. Now those specialists in Edmonton and experts across the country say there's nothing more they can do."

(Dr. Isabelle Chapados/ Pediatric Endocrinologist): "It's not allergic. It's another type of reaction that we have never been able to pinpoint."

"Show me your tummy."

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.

(Dr. Isabelle Chapados/ Pediatric Endocrinologist): "They are specialized in the weird and wonderful things (edit) they are there to discover new diseases."

The family tries to keep busy.

They're hoping for a conference call with the n-i-h this week.

And information on who will pay for his treatment.

A go-fund me campaign is helping with their existing bills.

Support that's even more critical.

As Deagan's father's is being laid off from the Snap Lake Diamond Mine in a matter of weeks.

(Jennifer Tregidgo-Clavette/ Mother): "Pray to god something comes out of this and we figure out how to live a normal life."

Google Map for coordinates 53.544389 by -113.490927.

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