Toddler with no immune system dies of organ failure waiting for bone marrow transplant

Evan was always laughing

June 27, 2007
Joanna Frketich
The Hamilton Spectator

Evan Glen spent his short life laughing despite living in a virtual bubble.

The east-Hamilton toddler died suddenly yesterday morning, mere weeks from getting a bone-marrow transplant that could have cured the rare disease that left him with no immune system from birth.

He had what is known as boy in the bubble disease. Evan was a prisoner in his own home or in hospital for his 33 months. He would have been three in September.

“He was still happy,” said his mom Donna Glen. “He was always laughing.”

Just Monday, Evan laughed his way through one of his regular twice-weekly visits to Toronto’s Hospital for Sick Children, giving no signs his organs were about to fail.

He was dead in bed when his mother went to wake him up at 8:30 a.m. Paramedics and staff at McMaster Children’s Hospital tried in vain to revive him.

“He went to bed and he was fine,” said his mom. “None of us thought it would end this way. He never gave up.”

His mom and dad, Jim, had hoped to find a cure for Evan’s severe combined immunodeficiency when they made a public plea in April to find a bone marrow donor.

He’d already had one bone marrow transplant on March 30, 2006, but the match wasn’t good and he developed what’s known as graft-versus-host disease. His donor’s immune cells were literally attacking his body.

Spectator stories were picked up by other Canadian newspapers and prompted an outpouring of support, but a new donor was never found.

“I was hoping the article would bring a happy ending, but I’ve learned there are no happy endings,” said Donna.

Doctors were planning on going ahead this summer with a second transplant using the same donor.

Evan couldn’t walk in his last days because the graft-versus-host disease had so badly damaged his joints. But he spent that time doing what he loved most: being with his family, going for walks in the stroller and watching Cars, his favourite movie.

“Maybe it was too big of a battle,” said his mom. “We have a lot of unanswered questions, but sometimes you don’t know why.”

His parents and big sister Olivia, who is four, hope people will join the bone marrow registry in his memory.

“He was a good boy,” said Donna. “I don’t know what he was here for, but we do appreciate the time we had with him.

“But I’m greedy and I want more.”

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