Calgary Family Holds Bone Marrow Clinic, Hoping to Save 7-year-old's Life

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Wednesday, October 6, 2010

By Lea Storry

A seven-year-old Calgary boy is hoping you can save his life by registering to become a bone marrow donor today.

Noel Young is the only person to be diagnosed with a rare form of chronic granulomatous disease, a genetic illness that decreases the ability of the immune system to fight infections.

The Grade 2 student needs a stem cell transplant, found in bone marrow, and hasn't located a match.

His mother is asking Calgarians to come to a stem cell drive and cheek swab event today.

"We were disappointed no one in the family was a match," said Anne Robillard, mother to Noel and his older brother, Ethan. "It was really devastating, and now we have to rely on an unrelated person in the public."

Cassandra De Luca, co-ordinator of donor support with the Canadian Blood Services' OneMatch Stem Cell and Marrow Network, said the chances of finding a match in a small family are 30 per cent.

She explained it's all down to the genetics each parent gives a child. The more children a family has, the better the chances of the genetics being repeated.

However, a stranger could end up being compatible. De Luca said 70 per cent of Canadians rely on unrelated donors to save their lives. She is appealing for people to register.

"Ninety per cent of our donations come from what we call peripheral blood stem cells," said De Luca. "It's similar to blood donations but a longer process. The second is where bone marrow is taken from iliac crest, at the back of the hip. The third is cord blood, umbilical cord blood, but we don't have a national cord blood bank."

In Canada, Noel had 264,876 searchable registrants and 14.5 million worldwide to draw from, but none of these potential donors is suitable. Robillard said she's not sure what her son's future will be since they've run out of drug options to treat him.

"I talk to him and say we're going to find a match and he says, 'OK, Mom,' " said Robillard. "He doesn't complain. I get so much strength from him -- he's a very brave little guy and just keeps going."

Robillard said Noel was sick as a baby, but there was nothing to be concerned about until he was three. When he couldn't eat and had diarrhea, the physicians at the Alberta Children's Hospital thought he had Crohn's disease. After running more tests, they discovered he might have chronic granulomatous disease.

"They did some genetic testing and it came back negative, but they couldn't figure out why it was negative," said Robillard. "A hematologist spread the word and a lab in Indianapolis finally confirmed he had a new genetic form."

With this diagnose, Noel's mother said she was both relieved and dismayed.

"It's great they know what he has now, but he has something no one has seen before," she said. "The only thing left is a bone-marrow transplant."

Ethan, 12, doesn't have the disease, while Noel has been in and out of the hospital so much that his mother has lost count. He has undergone many surgeries and suffers a variety of complications, including having trouble healing wounds.

"As soon as Noel has an infection or fever, I have to contact the hospital and take him there because his body can't fight the infection," said Robillard. But otherwise, Noel likes to laugh, is very social and is like any regular kid, his mom said.

The seven-year-old has been attending St. James Elementary Junior High School and loves it. It's here, at 2227 58th Ave. S.E., that Calgarians can sign up for the bone marrow registry, between 1 and 6 p.m.

Donors must be 17 to 50 years old, in good health and willing to donate to anyone in need -- anywhere in the world. Noel is just one of 798 Canadians looking for help.

It's the best gift you can give a family," said Robillard. "You have the opportunity to save someone's life."



© Copyright The Calgary Herald

Source: The Calgary Herald

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