Wednesday, September 03, 2008

Praying for a miracle
Lucas and baby Owen suffer from a rare blood disorder. Their parents are hoping for an equally rare match from a bone marrow donor needed to save their lives.

September 03, 2008
(Sep 3, 2008)

When Lucas Blake was diagnosed with a rare blood disorder last winter, his mother trusted her faith that the miracle donor who could save his life was growing in her womb.

For months, Manuela and her husband, Keswick, prayed that the baby, unexpected but welcome, was a stem cell match for their seven-year-old son.

"I was convinced this was a godsend," says Manuela, her eyes filling with tears. "We thought, This is going to save him.'"

Baby Owen arrived in June. A month later, doctors delivered the devastating news: he also carries the disease and will need his own marrow transplant. Now the Blakes are appealing to the community to help them find another miracle.

"I don't like to ask for help. I'm a very proud person, but this is my children," says Manuela at the dining table of her North End home.

Lucas and Owen suffer from Fanconi anemia, a genetic condition that affects just a few thousand people worldwide. It's passed on from parents who each carry the recessive gene. There's a 25 per cent chance a child will have Fanconi -- the Blake's oldest son, Noah, 11, is healthy.

Fanconi destroys the body's ability to reproduce blood cells. Often diagnosed in early childhood, the disease weakens the immune system and ultimately leads to death. The only cure is a bone marrow transplant.

With Lucas's health declining and Owen's future uncertain, the Blakes are desperate to find a donor match. "It's what we pray for every night," Manuela says.

Noah, the best chance for a match, was already rejected. Friends and family who volunteered for testing also failed.

The family is hoping to find a donor with the Red Cross's stem cell and marrow network, though their odds may be lowered by the Blake children's ethnicity. A donor match is more likely among the same race. In the Blake's case, Keswick is Jamaican and Manuela is Portuguese.

A match will be more difficult to find, but not impossible, says Cindy Graham of the Red Cross.

Nearly 75 per cent of people registered on the donor list are caucasian. The agency is looking for donors of different races to increase the chances for patients like the Blakes.

Just seven months ago, the Blakes had no hint that Lucas was even sick. Though many children with Fanconi are born with defects, Lucas seemed perfectly healthy.

Then in January, he developed a high fever. His parents thought Lucas had simply caught a bug. But the fever persisted, pushing the Blakes back to their doctor. At the appointment, Manuela, pregnant with their third child, mentioned Lucas was prone to bruising -- an ailment she had always attributed to an active childhood.

The doctor ordered blood tests. Two days later, he called and told the Blakes to take Lucas to the hospital immediately. Manuela and Keswick were relieved when tests ruled out leukemia. Their solace was shortlived. By March, specialists confirmed Lucas had Fanconi.

But Manuela quickly found hope for her son in her pregnancy. If the infant was a match, its umbilical cord blood could help Lucas. Prenatal tests could check if the baby also had Fanconi, but the procedure carried a risk of miscarriage. Manuela declined, not wanting to take any chances.

After Owen was diagnosed, Manuela and Keswick called a family meeting to tell the children. Lucas hugged his father, asking, "Who's going to help me now?"

"That was my breaking point," Keswick says.

Until a donor is found, Lucas will receive regular blood transfusions. The disease has weakened his immune system, making it too dangerous for him to return to school.

From behind his Mickey Mouse face mask, Lucas says he's feeling "sad and worried."

Manuela sends him out of the room to talk about the future. The life expectancy for those with Fanconi is 22 years. An infection could take Lucas or Owen sooner.

But the Blakes trust that a donor will be found.

"I just ask people to put yourself in my shoes," Manuela says. "What if they were your children?"

How you can help
* Registering on the donor list is easier than you think. There's no needles involved. The agency will send a kit in the mail with cotton swabs to rub the inside of your cheek.
* Donors must be between 17 and 50 and in good health.
* If you're a match for anyone in the world, the Red Cross covers your expenses for the donation.
* For more information, go to or call 1-888-2-DONATE.

No comments: