‘My son is allergic to life’

 

Deagan Clavette, seven months old in Stollery Children's Hospital, is suffering from severe allergies.

Deagan Clavette, seven months old in Stollery Children’s Hospital, is suffering from severe allergies.

An international search is about to begin in an attempt to find help for a Hay River child who is experiencing extremely severe and puzzling allergies.

Deagan Clavette, who will turn two years old in March, has spent the majority of his life at Edmonton’s Stollery Children’s Hospital, where he is now.

“My son is allergic to life,” said his mother, Jennifer Tregidgo-Clavette. “He’s very unpredictable, and anything at any time, it could be nothing, could trigger a reaction.”

In fact, she described her son as a possible bubble boy, referring to some other well-known cases in which children have had to be isolated from the world to survive.

“The hospital is a well-controlled environment, especially on his unit,” she said. “So he runs around on his unit but when we do go off the unit he is confined to his stroller and everything is wiped down. All his medical supplies are wiped down and brought with us.”

Outside of the hospital walls, he reacts all the time, she said. “He potentially is a bubble child. If I could buy an astronaut suit or a bubble to put him in, it would be perfect. My son would be able to live a normal life.”

Tregidgo-Clavette said the doctors at Stollery Children’s Hospital suspect he has conditions called mast cell activation syndrome, an immunological condition, and dysautonomia, a neurological disorder, but all tests come back with normal results or cannot be done on a child his age.

“It’s not been diagnosed yet,” she said.

Tregidgo-Clavette said there may be other treatments once a definite diagnosis is made.

“There may be. We don’t know,” she said. “There’s a lot of research in the U.S. and in other countries that know more about this. It’s rare. It’s not well known.”

She said all possible avenues have been exhausted in Canada.

“Our team of doctors has even contacted all their colleagues around Canada, and none of them have gotten any answers or anything they can add to Deagan’s case,” she said.

Tregidgo-Clavette said there was a team meeting on Jan. 11 where all the doctors working on the case were present.

“We came to the conclusion that we’ve exhausted all our resources at the Stollery, and it’s time that we look elsewhere,” she said.

So far, the details of what that will mean have not been worked out but the National Institute of Health in the United States has been contacted.

Tregidgo-Clavette explained the search will be for more advice about how to stabilize Deagan in order for him to be able to go outside and lead a normal life.

“My hope is that one of these days he’ll be able to go run outside with his brother and live a normal life like a child should be able to, not be stuck inside the walls of the hospital and think of that as his home,” she said.

Tregidgo-Clavette praised the work of the doctors at Stollery Children’s Hospital in trying to help her son.

“I’m so very grateful. They have done an amazing job,” she said. “Deagan would not be alive without them, honestly.”

She also praised H.H. Williams Memorial Hospital in Hay River.

In October 2014 when Deagan was seven months old, anaphylactic shock almost took his life but he was saved by an emergency tracheotomy at the hospital.

The condition is associated with a narrowing of the airways

Deagan currently has an allergy list of 25-plus foods and medications.

Tregidgo-Clavette said he has had numerous reactions, including anaphylactic shock, more than she can count.

“We have almost lost him many times since he was born on March 12, 2014,” she said.

Tregidgo-Clavette also appreciates the help of the governments of the NWT and Alberta, and her home community of Hay River.

She recently turned to the public for help with a crowdfunding campaign.

While she believes the flight to another medical centre and the hospital stay will be covered, her accommodation and meals will not be covered.

Plus, she said her husband, Kevin Clavette, recently learned he will be laid off from the Snap Lake diamond mine in the next couple months, and he will be looking for a new job.

Deagan’s older brother, four-year-old Kaelin, must also be cared for while he and his mother are away.

As of Jan. 24, the crowdfunding campaign – which began on Jan. 16 on the gofundme website – had raised $6,520 from 65 donors.

Tregidgo-Clavette said she and her family appreciate the help from the community.

“They are so amazing,” she said. “The community has been behind us the whole way.”

-Paul Bickford