Hay River rallies around boy with rare condition
Volunteers set target of $50k to help family with toddler affected by life-threatening allergies
Diana Yeager
Northern News Services
Monday, April 11, 2016
HAY RIVER
Hay River's famed spirit of giving is being called into action to help Deagan Clavette and his family.
Two-year-old Deagan has been in a hospital for most of his young life, awaiting diagnosis for a rare medical condition.
Deagan Clavette, centre, celebrates his second birthday in Stollery Children's Hospital in Edmonton on March 12 with his brother Kaelin Clavette and Spider-Man. Deagan has more than 25 known allergies and his reactions are life-threatening, forcing his family to relocate while they await a diagnosis and treatment. - photo courtesy of Jennifer Tregidgo-Clavette |
Deagan's life-threatening allergic reactions to more than 25 known foods and substances have him living in the Intensive Care Unit under 24-hour care at an Edmonton hospital.
According to his mother, Jennifer Tregidgo-Clavette, doctors at Stollery Children's Hospital suspect he has mast cell activation syndrome, an immunological condition, but he does not have an official diagnosis.
Now, Shari Burnstad is organizing Deagan Day, a community-wide event, on April 23 to raise funds for the family. Burnstad is a friend of the Tregidgo-Clavette family, and she hopes to raise enough to support them for at least another year in their challenging situation.
"I don't know exactly what the family needs but I know this is not the end for them," she said. "All they can do right now is manage the disease while they search for other options."
To make matters worse, Deagan's father, Kevin Clavette, has been informed that he will be laid off from his job at Snap Lake diamond mine in a matter of months, leaving the family with no stable income.
"I hope to raise at least $50,000 and, if they need more, I'll go back and do it again," said Burnstad.
She has enlisted the help of her friend Nancy Makepeace to go door to door to businesses, looking for donations.
"We must have knocked on 50 doors in the last two days, and we've gotten a positive answer from every single one," said Burnstad. "One family handed me a $1,000 cheque. My mouth just dropped - I started to cry."
Burnstad said she has been especially touched by Deagan's case.
"One thing that hit me is that his whole meal is a mix of amino acids, his whole room has to be bleached down, and he still has a smile on his face," she said. "If someone is sick, I'd sooner it be me, especially for a child."
Although Deagan Day is still in the planning stages, Burnstad said the community can expect a dine-and-dance evening, including an auction of items donated from businesses. She is also hoping different groups and individuals in the community will put together other events for the day. She said there is possibility of a craft sale and student car wash.
She has even contacted Hollywood actor John Travolta, who played in the 1976 film The Boy in the Plastic Bubble, as he has been known to support similar causes.
Tregidgo-Clavette had not heard of the fundraiser until speaking with News/North.
"This is overwhelming. I'm speechless," she said. "Hay River is amazing. The community has been by our side for this whole thing."
The Hay River family has been actively searching for another facility that can offer a diagnosis and more specialized care for Deagan.
"We are still searching for doctors or researchers in other parts of the world who specialize in these cases," said Tregidgo-Clavette.
In the meantime, the family has relocated to Edmonton so they can be with Deagan while he receives constant care at Stollery. Tregidgo-Clavette, her husband, and their four-year-old son Kaelin are renting an allergy-free house with minimal dust and no allergy-inducing foods for when Deagan is able to leave the hospital.
"He is allowed to be at the house but for him to stay at home with us is another experience," said Tregidgo-Clavette.
She said Deagan was discharged on March 29 but he caught a cold and had to be brought back in to his room at the hospital to be put on an epinephrine drip and ventilator.
"We got a good 24 hours as a normal family," she said. "I couldn't have asked for anything better."
Tregidgo-Clavette said any funds raised will help fill the gap while the family deals with the coming layoff of her husband. Rent, food and prescriptions are the big items, as well as a mattress for Deagan.
"He's sleeping on plastic play mats right now while we look for an affordable allergy-free mattress," she said.
The Deagan Day auction and evening events will take place at the community hall. Ticket prices and details will be announced in the near future.
