A Hay River one-year-old termed a ‘bubble child’ by doctors may move to the United States in search of answers about his condition.
Deagan Clavette has barely left an Edmonton hospital in the past year because his condition, a form of mast cell disorder, leaves him with severe allergies and in need of 24-hour care.
His mom, Jennifer, says doctors at the city’s Stollery Children’s Hospital have been unable to figure out exactly what is behind Deagan’s condition, nor how to treat it.
“It’s a constant struggle to even keep him outside in the real world. His doctors call him a ‘bubble child’,” she told Moose FM while at the hospital with Deagan, having recently moved south from Hay River.
“Usually, mast cell patients present in their teens. There aren’t many cases of infants and he was born with this disease. All the tests come back negative so we don’t know where else to turn.
“The National Institute of Health [a biomedical research facility in Maryland] is an option, as well as the Mayo Clinic [based in Minnesota]. We’ve been talking about going there – they are the only ones able to deal with his complex case.”
Background: What are mast cells and mast cell disorders?
The family’s plans have been hit by the news that father Kevin’s job at the Snap Lake mine will go in the next couple of months, following De Beers’ decision to bring work at the mine to a halt.
Kevin works for catering contractor Bouwa Whee. Only a handful of contractors are being kept on-site as the mine enters a much-reduced “care and maintenance” state.
With that in mind, Jennifer set up an online fundraiser late last week. By Tuesday, Hay River community members had helped to raise more than $5,000 for the family.
“The community has been by our sides through everything, since day one,” Jennifer told us. “It’s amazing what the territory has done for us, even friends of friends and people who care about Deagan.
“The money will go towards my accommodation in the States, wherever that may be, as well as meals and covering the costs of our bills at home.”
Deagan has spent almost 15 months in hospital, aside from three weeks where he was allowed to go home. In that short time he was twice admitted to intensive care.
Doctors in Edmonton are currently searching for a US-based physician prepared to receive Deagan’s case, before making plans to medevac Deagan to a US facility.
“Hopefully they’ll be able to diagnose him. I pray to God they will,” said Jennifer. “Something needs to come out of this. He needs to start living a normal life like any other child deserves.
“He deserves to be playing outside with his brother [four-year-old Kaelin] and enjoying exploring the world like a little boy should be doing, not being inside at the hospital.
“There have to be other kids around the world that have symptoms similar to this. He can’t be the only child in the world with this condition. Maybe in Canada, right now, but not the world.”