Evan Glen will die if exposed to germs. He needs a bone marrow transplant to live. Odds of a perfect match: less than 8 million to one.
By JOANNA FRKETICH
The Hamilton Spectator(Apr 14, 2007)
Evan Glen has lived half of his life in a hospital room.
Most of the rest has been as a prisoner in his own home.
The toddler’s grandparents are even barred from his East Hamilton house. They have rarely touched their two-and-a-half-year-old grandson.
Evan has no friends, no play dates and none of the usual preschool outings to parks and libraries.
It’s too dangerous. His immune system doesn’t work. He was born with severe combined immunodeficiency (SCID) so even the most common bugs could kill him.
“This is why they call it the boy in the bubble disease,” said his mom, Donna Glen. “I don’t take any chances. It’s just too risky.”
Glen washes her hands at least 20 times a day. She goes through two cans of Lysol disinfectant spray and one canister of sanitizing wipes a week.
It’s a far cry from the hockey practices and birthday parties she pictured when she became a mom.
But there is hope for a normal life.
A bone marrow transplant could cure Evan.
It’s the only treatment for a disease so rare that Toronto’s Hospital for Sick Children has only seen 75 kids with SCID in nearly 25 years.
Evan inherited it from his mother who didn’t know she carried a defective X chromosome.
He’s had one transplant already. It wasn’t a good match and didn’t work. But the unidentified donor is the only person out of more than 8 million people on the registry who comes close to matching Evan.
Unless a new donor is found, doctors will have no choice but to try using the same one again this summer.
That only gives Evan a 50 per cent chance of survival.
“My husband Jim wants him to live a normal life,” said Glen. “My (wish) is if he could just live.”