'Allergic to life' N.W.T. toddler turns 2 in Edmonton
'I am ... very grateful he's still alive,' says Deagan Clavette's mom
A Hay River, N.W.T., toddler who is "severely allergic to life" is celebrating his second birthday today at a Mickey Mouse-themed party in Edmonton.
There will be Mickey Mouse balloons — latex free because he's allergic — and streamers. Birthday cake is off the menu, as Deagan Clavette still only tolerates a diet of amino acids.
"It's kind of surreal actually," says Deagan's mother Jennifer Tregidgo-Clavette.
"My baby is growing up, he's going to be a toddler," she says.
"I am also very grateful he's still alive."
The family relocated to Edmonton not long after Deagan's birth, in order to access specialized care for his severe allergies and bizarre, unpredictable reactions that continue to stump doctors in Canada and beyond.
The family is no closer to confirming what's making him sick.
The National Institute of Health in the United States, known for diagnosing and discovering rare diseases, recently told the family they have nothing more to offer Deagan, says his mother. The family has exhausted all diagnostic resources in Canada.
Deagan is currently using a new drug for children with chronic hives and asthma attacks, but it's only been tested on teenagers. Since his medical team scaled back on food allergy trials in January, Deagan has not needed an EpiPen to treat a reaction, but his mother says he's far from being out of the woods.
"He's done this before — not needed an Epi for six weeks — and then ended back in the ICU."
There has been some good news: the family received word that the government of the Northwest Territories will pay for 24-hour homecare so Deagan can live outside of the hospital and in the family's allergy-free rental home in Edmonton until they find a medical centre to take on Deagan's case.
A team of eight nurses is being trained to monitor his breathing and give him medication when he gets a reaction.
"It will mean that we can finally be a family for once — we're not always split up going to the hospital," says Tregidgo-Clavette.
"Kaelin will have his little brother home. It means the world to me, honestly. It's what we have been longing for."
If Deagan is well enough today, he could get a day pass to celebrate his birthday outside of the hospital with family from Hay River who have made the long journey to celebrate with him.
Part of the proceeds from this year's Memorial Hockey Challenge between Yellowknife firefighters and RCMP on Apr. 24 will go to Deagan's family.