OneMatch Stem Cell and Marrow Network

It started as a child’s fever, promptly treated with an over-the-counter medication. But as Keswick and Manuela waited for their seven-year-old son, Lucas, to recover, the fever only worsened. Their wait for Lucas to “get better” would span over three years and a barrage of doctors’ appointments, blood and platelet transfusions, tests and an emotional rollercoaster ride.

Spring, 2007 was a disquieting one for the Southern 
Ontario family. When Lucas’s fever spiked and could not be controlled by medication, the family’s physician ordered blood work. Results showed Lucas had abnormally low blood, platelet and white cell counts. The diagnosis was a rare genetic condition called Fanconi anemia, an inherited disease that affects the body’s ability to reproduce blood cells. It affects approximately 1,000 people worldwide.

Typical of many Fanconi patients, Lucas was in bone marrow failure when diagnosed and needed a bone marrow transplant. Unfortunately, there was no family match for Lucas. Through the OneMatch Stem Cell and Marrow Network, a search of international registries was launched to find an unrelated match.

As if their son’s diagnosis hadn’t already turned their world upside down, Keswick and Manuela learned that the search would not be easy. Most patients are likely to find a donor within their own ethnic group. But finding a match for people of ethnically diverse backgrounds, like Lucas (whose parents are Jamaican and Portuguese), can be difficult. Many groups are under-represented on the Canadian registry and more people of ethnic backgrounds are needed as the number of Canadians waiting for transplants to treat potentially life-threatening illnesses continues to climb.

Keswick says, “Watching your child go through an illness is nerve-wracking—knowing that he just wants to do what all the other kids are doing—play ball, ride a bike, run. But he can’t and you have to protect him from things that might make him sicker, like a cold or flu.”

Lucas was also unable to attend school. Visits from family and friends, even outings to the movies, were out of the question.
At the time of Lucas’ diagnosis, Manuela was pregnant. They had hoped the baby might be a match and that his or her cord blood, rich in stem cells, could be used to treat Lucas.

But when Manuela gave birth to Owen the following spring, he too was diagnosed with Fanconi.

Lucas’s search had already taken a long time and put such an emotional strain on the family—now hoping that not one, but two matches could be found—that in the spring of 2010, when a cord blood match was located for Lucas, the family couldn’t believe the news.

Even Lucas said, “Is this for real daddy? Am I going to have a normal life?”

Cord blood was their best option since three years after Lucas’s diagnosis a bone marrow match still could not be located. The transplant took place at the Hospital for Sick Children (SickKids) under Dr. John Doyle, Section Head of blood and marrow transplantation. Lucas then spent three months in hospital.

“Words can’t put into place how grateful we are,” says Keswick. He and Manuela have become advocates for OneMatch and the recently announced public cord blood bank here in Canada. “Because someone took the time to register and give their donation of cord blood, our son has the opportunity to have a better quality of life.”

Lucas will always have Fanconi, but he now has the energy to do all the things he had missed—play ball, ride a bike, run—and he no longer requires blood transfusions. After being home-schooled since his diagnosis, he returned to school in January.

He walks a fine line between making sure his health is not compromised by things like colds and flu, yet he also needs to challenge his immune system and rebuild his defenses.

“Receiving the stem cells has given us the freedom to dream again,” says Manuela.

Owen, now age three, has checkups every three months as his parents continue to wait for that important telephone call.
“We have to hope that there is someone out there who will be able to donate for Owen so that he too can have a normal life.”