2 kids have rare blood disorder
HAMILTON -- Lucas Blake cradles his baby brother in his arms and the 7-year-old gazes at him with dark eyes full of love.
They are more than brothers; they are soldiers in arms. Baby Owen was supposed to be his saviour. Instead, he has joined Lucas in the same struggle to survive.
And as their father watches his two ill sons, all that keeps ringing in his ears are Lucas' words when he found out, "But Daddy, who's going to help me now?"
Lucas came home from his Grade 1 class last January complaining he wasn't feeling well. A bundle of energy who usually loves horsing around with his older brother Noah, he was suddenly overcome by fatigue and running a fever. His parents, Manuela and Keswick, initially assumed it was just the flu. It was only when they told their family doctor that they'd noticed Lucas had been bruising recently that something more serious was suspected.
After weeks of tests, the Blakes were given the devastating news: Lucas has Fanconi anemia, an exceedingly rare, genetic blood disorder. He needs blood transfusions to keep him alive, but his only hope for a cure is a bone marrow transplant.
Through their tears, his parents were suddenly seized by hope. In the midst of trying to find out what was wrong with their son, Manuela, 41, had discovered she was pregnant.
"We only planned on having two children," says Keswick, 37, with a sad smile at his beautiful family sitting around the kitchen table. "When we found out she was pregnant, we thought for sure it was a miracle."
Their miracle baby had to be the answer. Lucas' big brother wasn't a bone marrow match and neither were his parents. The new life growing in Manuela's womb became the focus of all their hopes. "I just thought God gave me him for a reason," she says. "He was going to save Lucas."
Owen was born in June but tests eventually showed that despite their months of prayers he could not be a donor for his brother. "To get that news," Manuela confides softly, "it tests your faith."
But there was more. Several weeks ago, they were called into a meeting at McMaster University hospital for news even more crushing -- not only can Owen not help his brother, but he needs his own saviour -- he has Fanconi anemia as well. Now the Blakes face the Herculean struggle of finding not just one bone marrow donor, but two to save their boys.
What makes their quest even more difficult is their ethnic backgrounds: Keswick was born in Jamaica and Manuela in Portugal. The boys' best chance of finding donors is within their own ethnic group, but no one in their extended families is a match and about 75% of the people on Canada's one match stem cell and marrow registry are Caucasian.
Shy and private, it is obvious that speaking about their family's ordeal is excruciating for both parents, yet they have no other option but to come forward to appeal to readers, especially those from their communities, to register as potential donors at onematch.ca.
"We feel so helpless," Manuela says, as she rocks the baby to sleep. "We're leaving our kids in someone else's hands and begging, 'Please fix them.' We're pleading to the public because we don't know what else we can do."
Joining the donor registry is as simple as requesting a kit from OneMatch and sending back a few swabs of the inside of your cheeks. That DNA information is then stored in their database for potential patients around the world.
If a match is made, the transplant is usually much simpler than it used to be when bone marrow was drawn from the donor's hip. With the newer peripheral blood stem cell transplant, a drug stimulates a donor's bone marrow to release stem cells into their bloodstream. Those cells are then harvested from their blood and transfused into the patient.
Since the search for Lucas began in March, no match has been found. "We're pleading with people of different ethnic backgrounds to find it in their hearts and get tested," Keswick says. "If it doesn't help our kids, it might help other kids out there.
CAN'T GO TO SCHOOL
"Just look at those boys and help them," he begs. "It's hard to watch them slip through your hands."
The life expectancy for those with Fanconi anemia is just 22 years. Lucas' health is already failing and because his immune system is so weak and he can't risk infections, he can no longer go to school or play with a lot of other kids. Visitors to the house are asked to wear a mask and when Lucas does venture outside, he puts on one of his disposable Mickey Mouse masks as well.
"Kids make fun of him," his mom says.
"He gets really depressed about it," Keswick adds. "He's always asking, 'How long is this going to take?' "
Owen is too young to understand what he is facing. But Lucas hears it all -- how he might die, how his parents are terrified. He watches them fight back their tears in front of a stranger and soon the little boy can't help crying as well.
His mother quickly draws him to her, hugging him close with one arm, cradling his baby brother with the other. "This is my soldier boy," Manuela whispers to him. "He's my strong boy. We're going to fix it, aren't we, baby? Yup, we're going to fix it."
Please help them try.