Mixed-race boy struggles to find stem cell donor

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 Lusas' 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. "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 recently. 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. Lucas is now like 70% 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%. Only 0.5% are black. And only 0.13% are multi-ethnic.

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Mixed-race patients struggle to find marrow donors