Hope for a treatment
The Cousineau and Lawson families have a very special bond, one that was born out of a tragic loss, and a precious gift.
In May 2007, nine–year–old Evan Cousineau was given a devastating diagnosis: adrenoleukodystrophy (ALD), a genetic metabolic disease that is usually fatal.
The family created a CaringBridge website almost immediately. “We sent everyone to CaringBridge,” says mom, Gina. “That way, we knew they were getting the right information.”
The Cousineaus learned that the University of Minnesota Children’s Hospital had begun treating ALD with bone marrow transplants. Within a few weeks, Gina, Evan, and his big sister, Mary, were on their way from San Clemente, California to Minneapolis.
Another family’s search
One–year–old Dominik Lawson was suffering from kidney failure. A transplant from his mom, Kelly, had failed, and the entire Lawson family had relocated to the Ronald McDonald House at the University of Minnesota while waiting for a new donor match.
“When we got to Minneapolis, I basically didn’t leave the hospital for the first 90 days,” recalls Gina. “But Mary really bonded with some of the families at the Ronald McDonald House, especially Kelly and Dominik.”
A tragic loss
Evan received a double cord blood transplant in June, and the initial results were very promising. But in August, he developed an infection that his weakened immune system could not fight.
On November 2, 2007, two days before his tenth birthday and that of his twin sister, Alaina, Evan died.
A precious gift
After Evan’s death, Gina continued to write on Evan’s CaringBridge website almost daily. Through the website, the family stayed in touch with the Lawsons.
“Because Dominik had already rejected the first kidney transplant, we knew he needed an absolutely perfect match,” explains Gina. “In February, I put out a call out on Evan\'s CaringBridge website about Dominik, and 30 people came forward.”
Twenty–year–old Mary Cousineau was among those to be tested. She soon learned she was a perfect match for Dominik.
“We truly believe that God and Evan were behind this,” says Gina.
This spring, the two families were again together at the Ronald McDonald House. On May 21, 2008, Mary donated her kidney to Domink. Thanks to her gift, another little boy has the chance at a long, full life.
More than 800,000 people have visited Evan’s CaringBridge website. The Cousineau’s story has inspired 1,500 people across the country to become part of the National Marrow Donor Program registry.
“Without CaringBridge, it wouldn’t have been possible for us to share our story, and to reach so many people,” Gina says.
“Even though we lost Evan, we had hope because of the bone marrow transplant,” says Gina. “If there had been no transplant, we would have had no hope. I want every family to have hope.”
“We’ve got donor drives planned for every weekend though the end of the year,” Gina continues. “That’s just what one family can do. Everyone can get involved. We can create a world wide campaign for bone marrow, cord blood, and organ donation.”
“When he was first diagnosed, it was the campaign to save Evan,” says Gina. “Now it’s the campaign to save others in honor of Evan.”