Finn is doing well today, thanks to a matching donor from Be The Match Registry
At first glance, Finneas Okochi is a typical four-and-a-half-year-old boy. He likes cars, playing hide and seek with his sister and riding on his new bike. He is full of laughter and loves to share his expertise in Star Wars with anyone in earshot. In fact, Finn has been known to approach groups of grown-ups and strike up conversations, leaving them amazed by his charm and wit. His charismatic and outgoing behavior, his parents say, is from the many months spent in the children’s ward of Memorial Sloan Kettering Cancer Center where he was surrounded by doctors, nurses, and other adults.
Diagnosed at birth
At birth Finn was diagnosed with Wiskott-Aldrich syndrome (WAS), a fatal hereditary immune system disorder that claimed the life of Finn’s uncle Mark in 1975 at the age of nine. In fact in the mid 70s, most children with WAS did not survive much longer than a year, as today’s life-saving bone marrow transplant treatment was not widely available and the National Marrow Donor Program® (NMDP) had not yet been established.
Thanks to advances in bone marrow transplant techniques and the creation of the NMDP, a cure was now available for Finn. The problem was not only that Finn needed a bone marrow match but that he also had to be old enough to survive the radiation and chemotherapy needed to prepare his body for the new bone marrow. Finn spent most of his first two years in and out of the hospital, staying for months at a time, while doctors scrambled to get his body stable enough to undergo a bone marrow transplant, his only chance for a cure.
A matching donor
To find a match, siblings and close relatives are tested first, but 70% of patients searching for a donor do not find one within their own family. Finn is half Asian and half Caucasian, so finding a match could have been a challenge, since only 7% of the potential marrow donors on Be The Match Registry® are of Asian descent. The odds did not seem in his favor, but a search of Be The Match Registry began to find an unrelated donor for Finn.
Despite the odds, a perfect 10 out of 10 match was found.
The person who helped save Finn’s life is Melissa Mahany Budd. Melissa had joined Be The Match Registry about eight years before during a blood and bone marrow drive underwritten by Coca-Cola, her employer at the time. Ironically, by the time she was contacted by Be The Match, her mother was undergoing her own cancer treatment. Melissa felt there was not much she could do for her mom medically, but she could do something for someone else.
Melissa was still nervous, and like many potential marrow donors, she worried that her bone marrow might not work. After completing a series of medical tests, she found the actual procedure very easy. Melissa’s life-saving cells were collected through a peripheral blood stem cell (PBSC) donation, similar to a donating platelets. PBSC donation, the more common of the two methods of donation, requires no anesthesia or surgery. Melissa reported the worst part was sitting still for several hours.
Be The Match maintains strict confidentiality standards to protect the privacy of donors and patients. Melissa only knew that the person she was helping was a young boy with Wiskott-Aldrich syndrome. The Okochi’s were only told their son’s donor was a young female. A year after transplant both parties had the opportunity to sign consent forms releasing their contact information to each other, and both Melissa and the Okochi’s were thrilled to begin communicating with each other.
When Melissa found out the transplant was a success, she said it was hard to describe how joyous she felt. She could not get over the fact that something so small could save someone’s life, and she was happy to be able to share with her mom that she had saved this boy’s life. Her mom has since passed away from cancer.
Although it is not common to be called twice, Melissa learned that she may be matched to another potential recipient in need of transplant. She hopes she will have a new opportunity to save another person’s life. What would Melissa say to someone who is thinking about registering: What are you waiting for? It is the easiest gift you can give.
Finn and Melissa will meet at the Be The Match Foundation Tribute to Patients
You can celebrate with Finn and Melissa at the Atlanta Tribute to Patients. The tribute takes place Friday, Sept. 16, 2011, at the Agnes Scott College Letitia Pate Evans Hall, in Decatur, Georgia. Please join us to witness this remarkable meeting, to learn more about the work of Be The Match Foundation® and to offer your support for our life-saving work.