Updated Mon. Feb. 19 2007 9:52 AM ET
CTV.ca News Staff
The family of a nine-month-old “bubble boy,” who has spent months living in isolation in an Alberta hospital, has received the news they’ve been waiting for. A bone marrow donor has been found who can help their son.
Evan Pogubila, has severe combined immunodeficiency disease, one of only a handful of children in Canada with the ailment. Caused by a genetic defect, the condition is the rarest, and deadliest, of the primary immunodeficiencies.
Children with the disease lack lymphocytes, the white blood cells that fight infection. Any contact with anyone with the slightest illness could compromise what little of his immune system is left. Even the common cold could be devastating.
The chances of finding an exact match for Evan were less than 1 in 3 million, making the connection even more remarkable.
His father, Fred Pogubila, says the family felt a wave of emotion upon learning of the news.
“Shock. Disbelief. Bewilderment. Excitement — the whole gamut of emotions came through. We’re just happy that we’re now in the game,” he told Canada AM.
Evan has been living in solitude from the public for more than three months — separated even from his twin sister Jordan, who doesn’t have the condition.
“That’s probably the hardest part of this right now,” says Pogubila. “We bring her in but they cannot have any contact. So we have a window that they beat on the glass against each other. Whether or not there’s a connection, we’d like to think this is. It’s fun to see them interact even if it is through a pane of glass.”
Evan’s only chance of leaving the hospital room he’s called home for more than half his life was a bone marrow transplant.
Last Thursday, Evan’s family received word that a bone marrow match had been found and the donor was willing to undergo the procedure to help Evan.
The transplant can only be performed at Sick Kids Hospital in Toronto. So next week, Evan will fly to Toronto on a medical air ambulance.
Pogubila says while the family is excited and grateful, they remain nervous about the road ahead. Evan will have to undergo chemotherapy to prepare his system for the transplant. And there’s no guarantee his body will accept the donor’s marrow.
“There’s a lot of work that goes on. The fact that we found ‘the magic bullet’ we have to put it into action right now. It is a long process that’s going to take place and the success rate, it’s not guaranteed that he has the perfect match, that it’ll engraft correctly to his body.”
Pogubila says he’s learned a lot from this experience, particularly how important it is to donate blood.
“It’s unfortunate that it’s taken me to be put in this situation to step forward and donate. But it’s the one thing that everyone has and the one thing that everyone can give. It doesn’t discriminate against age, colour race, economic status of some sort. It’s one thing that we can all give and we can all share.
“And basically, I’d like to give back to what we’ve been given from the community.”
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