Parents hope for perfect donor match
Gary Yokoyama, the Hamilton Spectator
Little Evan Glen (above with his mother, Donna, looking for an educational program to play) suffers from severe combined immune deficiency, also known as boy in the bubble disease. They’re hoping to find a matching bone marrow donor.
Evan Glen, now 2 1/2, was on life support before doctors took his frantic parents seriously. At eight months old, he started throwing up. He stopped eating, drinking and playing. They rushed him to hospital. The diagnosis was worse than anything his parents could imagine.
By Joanna Frketich
The Hamilton Spectator(Apr 14, 2007)
It started with a cough that never went away. Evan’s parents were told it was a cold he was having difficulty shaking.
When Evan was eight months old, he started throwing up. Again they were told not to worry. It’s just a virus.
A few weeks later, he stopped eating, drinking and playing.
“He’d just lie around like a lump,” said his mom Donna Glen. “Jim and I were panicking. We were terrified.”
Desperate for help, they demanded to see a pediatrician, who sent Evan for tests.
He was on life support by the time the results came back.
When his parents rushed him to McMaster Children’s Hospital on July 4, 2005, he was nearly lifeless.
“If only someone had listened to me,” said Glen.
The diagnosis was worse than anything Glen or her husband could have imagined. Evan can’t defend himself from infection by viruses, bacteria and fungi because of a defect in the white blood cells that would normally protect him. It’s called severe combined immunodeficiency (SCID).
“It’s a very dangerous and very ominous condition,” said Dr. Chaim Roifman, who specializes in the disease at Sick Children’s Hospital in Toronto. “They’re born with no ability to fight even a minor infection.”
First there was relief that finally Evan would get help.
“Mostly it made me more angry,” said Glen. “I wanted to yell and scream.”
Against all odds, Evan came off life support a month later.
“He sat up, grabbed the soother, took a bottle of formula and drank it down,” said his mom. “I actually thought, ‘Is this real?'”
He moved into a hospital room while waiting for a bone-marrow transplant to give him a new immune system. He was so vulnerable to infection, he wasn’t allowed to touch the floor. There was a small mat beside his bed to play on. If any toys went off the mat, they had to be taken away to be cleaned.
He couldn’t wear normal clothes, only hospital gowns specially laundered. His room was off limits except to a small skeleton staff and his parents.
He spent both his first birthday and Christmas there. Hospital staff and volunteers provided the gifts because his father was struggling to support the family on his own, painting cars. Evan’s illness meant his mother couldn’t go back to her job driving a school bus when her maternity leave ended.
It took seven months to find Evan a bone marrow donor. It wasn’t a perfect match, but eight out of 10 would have to do.
“It’s not great,” said Roifman. “You use eight out of 10 when you have no choice.”
Evan was literally put in a plastic bubble to transport him directly to Sick Kids. He had chemotherapy to prepare for the transplant on March 30, 2006.
It went unusually well, and Evan left the hospital 55 days after the transplant, far ahead of schedule.
For the first time in 11 months, Evan was home.
“He just circled the house,” said Glen. “He was enthralled. We thought it was over.”
Evan and his big sister, Olivia, had a normal life to start living.
In July, Glen worked up the courage to take them to Gage Park. They went at 7 a.m. so they’d be the only ones there. Glen sprayed every piece of playground equipment with Lysol before taking Evan out of the stroller.
“He froze,” she said. “He just stood there. I told Olivia to show him how to play. He absolutely loved it. He loved the slide and the swings.”
At the end of the month, Glen added the library to their limited outings. She phoned first to find out when it wasn’t busy. Again, she got out the Lysol and sprayed the children’s area before letting him play. They’d wash their hands before leaving the library. When they got home, they immediately changed their clothes.
The crowning moment was Evan’s second birthday. He had a real party attended by about 30 friends and family at the YWCA on Ottawa Street.
“I was crying,” said his mom. “We actually had a normal life. I should have bitten my tongue.”
It came to a crashing end weeks later. Evan had diarrhea. He got better in four days, giving hope that his new immune system was working. But one week later he was sick again.
“It was our worst fear realized,” said his mom.
Evan has graft-versus-host disease. His donor’s immune cells are literally attacking his body. He was at high risk for it because his donor wasn’t a perfect match. An eight out of 10 match has a 50 per cent chance of success. A perfect match works 80 per cent of the time.
Best is bone marrow from a sibling, which has a nearly 100 per cent success rate. But, unfortunately, Olivia isn’t a match for Evan.
That leaves the toddler back at Square 1. He’s in Sick Kids waiting for another transplant from the same donor.
His parents aren’t allowed to know who it is or where he is.
“Thank you, thank God for you,” says Glen choking back tears. “Because of you, Evan had a chance. Because of you, Evan has a second chance.”
But his parents refuse to give up on that perfect match. They pray someone joins the registry today, tomorrow, soon — before it’s too late.
“Evan has beaten every odds given to him,” said his mom. “We are very hopeful.”
How to donate
What it is: Bone marrow is the tissue in the soft centre of the bones that manufactures blood cells.
Red blood cells carry oxygen, white blood cells fight infection and platelets help stop bleeding.
How it works: Diseased bone marrow is
radiation or chemotherapy. It’s replaced by healthy marrow from a volunteer donor.
Who donates: Of the 200 Canadians needing a bone-marrow transplant each year, fewer than 30 per cent find a family match. Canadian Blood
Services has a registry of more than 230,000 willing Canadian donors. Worldwide, there are more than 50 registries listing more than eight million people.
How the bone marrow is collected: It’s an operation. The donor is under general anesthetic; the marrow is taken from the hip bones using a special syringe and needle. The donor is released the same day but will be stiff and sore for at least three days.
The body replaces the bone marrow cells within two to three weeks.
How to join the bone marrow
registry: Healthy adults aged 17 to 50 can contact Canadian Blood Services at 1-888-2 DONATE or bloodservices.ca.
— Canadian Blood Services
to help Evan
z Evan needs a blood product called platelets weekly to help his blood clot. Hamilton Health Sciences is
often short of platelets. To donate platelets, contact Canadian Blood Services at 1-888-2-DONATE or bloodservices.ca.
z To offer financial or other assistance to the family e-mail firstname.lastname@example.org.