July 2006
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Blood brothers
When Jason and Melissa Winchell, two teachers in the Lynn, Mass., school system, decided to do relief work at a Haitian orphanage, little did they know how much it would change their lives.
When they met brothers Orilüs, now 8, and Jackson, now 6, in June of 2003, they immediately felt a connection. While their original family plan called for biological children first and adopting children in need second, the boys from Port-au-Prince led them to modify that plan. "We believe in divine meetings," says Melissa, citing faith as their guide. By August 2003, the adoption process was underway.
What Melissa and Jason didn't know until later in the process was that Orilüs had sickle cell anemia and that Jackson was a carrier, which means symptoms don't manifest themselves, but he could pass it to his children.
A genetic disease, sickle cell occurs when red blood cells are abnormally shaped and can't move freely through the blood vessels. They often get stuck and block the flow of blood, resulting in tremendous pain and organ damage. People with sickle cell have a life expectancy of 40 to 50 years, although more severe cases can lower that number.
Despite the difficulties Orilüs would face, Jason and Melissa decided to continue with the adoption. "We felt so strongly that they were meant to be in our lives," she says.
As soon as the Winchells got their new sons to the United States, they began researching sickle cell disease and discovered a possible cure—a bone marrow transplant. It was a possibility, but only if they found a perfect match Orilüs. Luckily, they had just that in Jackson.
Following a pain crisis in fall 2005, the Winchells decided to take the next step and brought Orilüs to Children's Hospital Boston to see Leslie Lehmann, MD, interim clinical director of the Pediatric Stem Cell Transplantation Program. She explained that sickle cell transplants, even with a sibling donating, are high risk, with a 10 percent chance of death and a 10 percent chance of rejection. Only about 100 children have had the procedure in the United States.
But the Winchells decided to take the chance and place their son and their faith in the hands of their doctors. On May 12, 2006, Jackson had his bone marrow, or "bone blood" as the boys call it, harvested through his hip, and Orilüs underwent his transplant.
Almost a month later Orilüs was released, but a fever and pancreatitis soon sent him back to Children's. The Winchells are hoping his next trip home will be more permanent, though it will be under very strict guidelines. With his new, still-weakened immune system, he must stay in his house or his yard and can only come into contact with his immediate family. Over time, as Jackson's transplanted immunity takes hold more strongly, Orilüs will be able to see his grandparents and other small groups of relatives.
According to Melissa, it's all worth it, as Orilüs is essentially cured of this life-threatening disease. "Now he'll just be a carrier, like Jackson," she says, happily. "And Jackson enjoys being told he is a 'superhero' for helping Orilüs, who is the 'warrior' in the family." It'll take a year before they know for sure if Orilüs is in the clear, but the Winchells have faith, and it hasn't failed them yet.
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