Paula Beauchamp, CanWest News Service; Calgary Herald
Published: Sunday, July 01, 2007
CALGARY — Courageous Calgary toddler Evan Pogubila has lost his battle against the rare SCIDs disorder, dying in the arms of his parents on Tuesday night.
Thirteen-month-old Evan, the only child in Western Canada with the rare immune system disorder known as “bubble boy disease,” had been plagued by infections, graft-versus-host disease and a cancer diagnosis.
The complications arose following a transplant operation at the Toronto Sick Kids Hospital in March.
Evan’s mom Melanie Pogubila on Saturday said the family felt devastated, but knew they were “blessed to have Evan for the short time he was with us”.
“Evan’s name means ‘little warrior’, and that’s exactly what he was,” she said.
“You’d go into Evan’s room and he’d have a smile for you, even when things were rough at the end.
Pogubila, who returned to Calgary this week with Evan’s twin sister Jordan and husband Frank, said the couple’s daughter is providing the emotional medicine the family needs.
“She’s a Godsend. She makes us smile, she’s still here and right now, that’s the best medicine for us,” Pogubila said.
Severe combined immunodeficiency syndrome is a genetic illness that leaves the body with little or no immune system to fight infection and makes simple colds as deadly as pneumonia.
Diagnosed in November, Evan lived for four months in a special germ-free room at the Alberta Children’s Hospital, isolated from the outside world.
His mother could not touch him with bare hands or let him play with her hair.
In March, Evan was transferred to the Toronto Sick Kids Hospital to undergo a rare bone marrow transplant after a perfect donor match was found.
The operation was Evan’s best hope of living a normal life and for the first 50 days he seemed to be recovering well as the bone marrow grew and engrafted.
But shortly before Evan’s first birthday, an infection set in.
In her heart-filled journal on http://www.caringbridge.org, Evan’s mom wrote in May, “Our little Evan is again proving what a strong little man he is.
“How I wish I could take his pain and make him all better.”
Evan’s grandfather, Rick Oncescu, said his grandson’s memory would always be alive for the family, especially through Jordan.
“She will always be here and we’ll always remember them as two,” he said.
Jen James, a critical care nurse who cared for Evan, said, “I wish we could have done more. It was a pleasure to look after Evan. Evan was a sweet baby and I wish I had known him when he was well.”
A memorial service will be held for Evan in Calgary on Tuesday.
© CanWest News Service 2007
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