Mitch Goldberg of Toronto and Jessica Granofsky of Richmond Hill received Volunteer Service Awards from the Ontario Government at ceremonies held this week at the Arcadian Court. Mitch was recognized for 5 years of consecutive service to Fanconi Canada while Jessica was honoured with a Youth Volunteer Award.

The Ontario Volunteer Service Awards are presented to individuals who make lasting and meaningful contributions, or provide significant support  to a community or non-profit organization within Ontario.

Mixed-race boy struggles to find stem cell donor

Updated Sat. Jun. 6 2009 10:56 PM ET

Angela Mulholland, CTV.ca News Staff

Lucas Blake was over the moon when his parents told him they were expecting a new baby. Not only would the seven-year-old have a younger sibling, there was a chance that baby would save his life.

Just months before, Lucas was told why he was so exhausted and got massive bruises after the simplest of injuries: he had Fanconi anemia, an inherited disorder that leaves his bone marrow unable to make new blood cells.

At first, Lucas' parents were relieved with their son's diagnosis; doctors had been worried he had leukemia. Then they learned that the only cure for Fanconi anemia was a bone marrow or stem cell transplant.

One's best chances for a stem cell donor are often within a person's ethnic group. But Lucas' father is of Jamaican descent and his mother is of Portuguese descent. Finding someone who had blood like Lucas' would be like looking for a needle in a haystack.

Lucas' older brother (who is free of the disease) was not a match, but now there was a new baby on the way, bringing Lucas new hope.

"Lucas was so excited and happy when the baby came," recalls his father Keswick, in a phone interview with CTV.ca. "He was jumping up and down at the hospital and so happy."

After baby Owen was born, his doctors saved his stem-cell-rich umbilical cord blood and rushed it through genetic testing. Four weeks later, the family had an answer.

Not only was Owen's blood not a match, there was more bad news: Owen had inherited the genes for Fanconi anemia too.

"It was like a double hit," recalls Keswick. "When we got the test result, my wife cried. And Lucas was so sad. He looked at me and said, 'Who's going to help me now, Daddy?'

"As a parent, to hear your son say, 'Who's going to help me now?'... It's very, very hard."

Owen turned one year old last week. His health is good and he's just learned to walk. But Lucas, now eight years old, is not as well.

The blood transfusions he began after his diagnosis now come every two weeks where once they were needed only every three times a year. He gets drained so easily and his immune system is so compromised, he can no longer go to school.

"Sometimes he gets very mad," says Keswick, "He asks, 'Why did this happen?'... It's difficult and frustrating. Let's just say that sometimes, the stress can be cut with a knife."

Lucas is now like 70 per cent of patients who need a stem cell or marrow transplant: he can't find a suitable donor in their family. Finding an organ match might be easier, since they rely on blood type, which is not related to race. But Lucas needs a donor whose blood has similar DNA markers, or HLA antigens, as his own, to ensure his own immune defences and the donor's cells don't try to attack each other.

If Lucas were looking for a donor within the black community alone, it would be hard enough. Add in his mixed heritage and his prospects are not good.

Most of the people on Canada's stem cell and bone marrow registry, OneMatch, are Caucasian; a full 83 per cent. Only 0.5 per cent are black. And only 0.13 per cent are multi-ethnic.

OneMatch has been working hard to find more diverse donors, but getting their message through has often been difficult, says OneMatch's John Bromley.

Many visible minority Canadians are recent immigrants and some have not even heard of stem cell and bone marrow donations. With some groups there are language barriers; with others, there are cultural issues.

"New Canadians often inherit belief systems from their mother countries and that can mean a lot of myths and misinformation," says Bromley.

Some Chinese, for example, think of blood as a "life force" and worry that donating it would mean losing strength. But the Chinese-Canadian community has also shown just how strongly it can band together. When a campaign was started to save six-year-old Toronto girl Elizabeth Lue, who also had an incurable blood disorder, more than 10,000 people donated blood and money to try to help.

Elizabeth died before a donor could be found, but Bromley says much was learned from that campaign. Most notable was that people will donate blood and sign up for donor registries if the call comes from within their own community.

"We often appeal to champions in a community, and a lot of time that means faith-based leaders: the imans, the rabbis, ministers. We work with them on dispelling myths about bone marrow and stem cell donation and they tell the stories of patients in the community who need their help," he says.

"We have found that is has to be the community leading the initiative. That's the only way it works. It can't be OneMatch appealing for donors and people to sign up on the registry. It has to be Chinese asking Chinese to help."

Keswick says he thinks the reason that many in his community haven't sign up for the registry is a simple lack of awareness. When they hear his family's plight, many want to help.

"A lot of people who hear our story ask, 'How can I sign up to help your boys?' But you need to be willing to help others. You need to sign up and be willing to help anyone who needs your help.

Right now, there are 741 Canadian patients who need a stem cell or bone marrow transplant. OneMatch is also part of Bone Marrow Donors Worldwide, which pools 59 registries from 43 countries, giving patients access to more than 12.5 million volunteer donors.

Even with our diverse ethnic makeup, the 20,000 people registered on OneMatch are still not enough to meet the need. That's why in 2006, 77 per cent of stem cells used by Canadian patients had to be imported from other countries.

Lucas Blake is still waiting for his match. His father, Keswick, says that while it's only been a year and half since Lucas' diagnosis, their world and all the plans they had have crumbled. But he now makes it his mission to urge more Canadians, especially those from his own community, to register as potential donors.

"Come on. Just sign up," Keswick says. "Find it in your heart to go get tested. If it doesn't help our kids, it might help other kids out there."

 

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 Facts about stem cell and marrow donation

Who can register?

Any Canadian who is healthy, between the ages of 17 and 50, can join. OneMatch asks that you be willing to donate to anyone in need and to stay on the registry for as long as you are in good health.

How do I sign up?

By either visiting the OneMatch.ca website to fill out an online questionnaire and registration form, or by calling 1-888-2-DONATE (1-888-236-6283) to request a printed information package.

How is my DNA type entered into the database?

OneMatch contacts applicants to make arrangements for a mouth swab test - like the kind used in Law & Order -- so that their DNA typing results can be stored in the database.

When will I be called to donate?

Not every person who joins the registry will be asked to donate stem cells or bone marrow; in fact, chances are most donors will never be called. Others may be called upon more than once.

How are donations made?

There are two kinds of donations that vary depending on the need of the patient. Stem cells can be collected from circulating blood. The collection involves a painless procedure that is akin to a blood transfusion and performed in a clinic.

The other kind is stem cell donation from bone marrow from a hip bone. This procedure is done under general anesthetic. Most donors report some soreness but are back to normal in a few days.

What is the outlook for patients getting transplants?

 

Transplant outcome depends on many factors including the level of compatibility between the donor and the recipient, the type and stage of the disease, the age of the recipient and the age of the donor. There are no guarantees for the patient, but a transplant may be the best hope of returning to good health.