Asian Fortune Your source for all things Asian American
By Heidi Zheng
Last month, the Okochi family from Montclair, New Jersey spent an unforgettable Father’s Day in Washington, D.C., where Jiro Okochi met with federal lawmakers as an advocate for Be The Match, an organization that had once saved his son’s life.
Now 10 years old, Finn Okochi is a survivor of Wiskott-Aldrich Syndrome (WAS), a hereditary disorder that is present at birth. Symptoms such as infections and bleeding usually show within one year.
Having lost both her older brother Mark and an uncle to WAS, Kim Okochi knew her family history put Finn at high risk, since most WAS patients are male. So after Finn was born, Jiro and Kim had him tested right away, and the results confirmed their worst nightmare, they immediately put him on treatment.
As six-month-old infant, Finn underwent chemotherapy and radiation. In the process, he had to have his spleen removed.
Unfortunately, none of Finn’s relatives qualified to be a donor. Which was actually well expected: because Finn is mixed-race and his tissue types are much more varied than either side of the family.
Finding a match remains a challenge for not just bi-racial, but most minorities in general. The likelihood for Caucasian patients to procure a donor on the Be The Match registry is close to 97%, but the chances for African Americans and other ethnicities, the chance is lower, ranging from 76% to 90%.
Although Asian or Pacific Islander patients have an estimated 84% likelihood to find a matching donor, the staggering lack of resource proves to be problematic. Jiro told Asian Fortune, “I consider it a miracle to be able to find a donor. Odds are against you in general if you are Asian.”
For blood and marrow donation is a stigma in Asian communities. In traditional beliefs, blood and other bodily substances are essential to one’s being; taking them out of the body would be, as Kim suggested, “taking the soul.”
When Finn was four, Jiro did a registry drive at his alma mater, UC Berkeley, where over 60% of its 26-thousand undergraduates were of Asian descent. Yet only around 100 students offered to help. When approached, most students declined or deferred to ask their parents’ permission first.
Then there is the popular misconception of marrow donation. Most associate the procedure with going in general anesthesia and tapping the spinal cord, which could be extremely painful and hard to recuperate. Nowadays, though, doctors extract stem cells from the donor’s blood in a fashion similar to dialysis. When Jiro went through the same procedure last month, he simply “spent a couple of hours in the chair,” and other than taking a regimen of medication to stimulate stem cell production, “it was just like donating blood.”
Jiro first got involved with Be The Match while he was doing a fundraiser at their local hospital, where Be The Match “showed up with a table” and did sample swapping on the site. Jiro said it was an eye-opening experience, for he had not known that there were organizations out there beside hospitals that were devoted to help patients like his son.
Through Be The Match, the Okochis found the match for Finn: Melissa Budd, a quarter-Japanese, had joined the registry at a corporate blood drive during the time when her mother was in chemotherapy for breast cancer. Finn received the life-saving transplant at the tender age of one.
“Transplant is Day 0,” says Kim. The patient would then remain in isolation and close watch for a year, in case the body rejects the foreign marrow. Long periods of confinement in the hospital took a toll on the Okochis both physically and emotionally. Growing up, Finn had been largely isolated from the outside world, unexposed to normal daily contact with his peers.
Luckily, it had all worked out as planned and Finn is in excellent physical condition today. He does well in school, plays soccer, and likes chess. The Okochis are immensely grateful for the turn of events. So when Be The Match invited Jiro enter the registry himself, Jiro said he was excited and found it to be “an honor; I feel lucky even to be asked by them.”
Sometimes people sign up but end up getting cold feet. This is a serious issue, since once a donor indicates to be available, the patient starts to get ready by undergoing chemo and other procedures that put their at a risky position as well. Be The Match makes sure to follow through with the donors and make sure they commit to the very end.
Anyone can order a kit from BTM; all you have to do is to swap your cheek, then seal it in the envelope. Due to the shortage, Asians aged 18-44 are free to register, and will stay in the data bank until 60. For ages 45 and above there will be a $100 tax-deductible fee to process the DNA.
Readers interested in joining the register, can visit BeTheMatch.org for more information.
