When
the Cystic Fibrosis Foundation was established in 1955, children with cystic
fibrosis (CF) rarely lived long enough to attend elementary school. Due in
large part to the CF Foundation's aggressive investments in innovative research
and comprehensive care, many people with the disease can now expect to live
into their 30s, 40s and beyond.
At first glance, Finneas Okochi is a typical four-and-a-half-year-old
boy.
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. 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.
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. 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.
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. Despite the odds, a perfect 10 out
of 10 match was found.
Melissa’s
Story
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 was nervous,
and like many potential marrow donors, she worried that her bone marrow might
not work. Melissa’s life-saving cells were collected through a peripheral
blood stem cell (PBSC) donation, similar to donating platelets. Melissa
reported the worst part was sitting still for several hours.
Good news
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. What would Melissa say to someone who is thinking
about registering: What are you waiting for? It is the easiest
gift you can give.
JDRF is dedicated to funding the highest-quality research around the world to develop better treatments, prevention, and ultimately a cure for type 1 diabetes (T1D).