Friday, February 02, 2007

Asian Americans: Please Help Save A Life

One In A Million
We all like to believe that our children are one in a million. But what if it were actually true? What if your child had a rare blood disease and their only chance for survival was finding that one in a million match? Now imagine you're the parent of 2 year old Harrison Leonardo who has Acute Myelogenous Leukemia (AML), needs a bone marrow transplant to survive and the odds are even worse. Of the 1.4 million registered donors in the National Marrow Donor Program, none are a match for Harrison. What makes it difficult is that bone marrow matches rely heavily on hereditary and ethnic factors. Of the 1.4 million only 6.6% or roughly 425,000 are Asian American. What makes it seemingly impossible to find a match is that Harrison is half-Filipino and half-Caucasian. Narrowing down the field, there are 34,000 Filipinos and only 11,000 multi-ethnic Asian Americans registered as donors. Neither his parents, younger brother or anyone in his extended family are matches. Harrison and others like him are in desperate need of finding matches within the Asian American community at large. I didn't realize how difficult it was to find a bone marrow match until I heard about Harrison's story on SFGate.com and checked out his web site at helpharrison.com. Sure I've heard and read stories in the press regarding bone marrow donor drives. And please pardon my medical cluelessness, but I always thought they were somehow related to blood drives and it was as simple as matching blood types. Now I know that it couldn't be further from the truth.

Hidden But Deadly Problem
In 1989 two Asian leukemia patients, Amanda Chiang, 9 months, and Judity Jang Berkoltz, 32, were in desperate need of bone marrow transplants. Neither were able to find a match within their own families and turned to the National Marrow Donor Program (NMDP), hoping to find a match with unrelated marrow donors. At the time there were only 123 Asian donors listed on the National Registry. Their families and friends were able to recruit some 2,000 Asian American marrow donors, but none were compatible matches. Unfortunately, their deaths highlighted a hidden but deadly problem within the Asian American community. But it also gave birth to the Asian American Donor Program (AADP) and other organizations like it.

What If It Were My Son?
What really got to me was thinking about my own 1 year-old boy who is half-Filipino and half-Caucasian. What if he contracted a rare blood disease and we were faced with a similar situation? How many potential donors would there be for him? Now ask yourself how many potential donors would there be for your child? Needless to say I become a registered donor this week and I encourage every one of you to do the same. You need to be between the ages of 18-61 and in good health. After filling out some forms there's a test kit where you swab the inside of your cheek to get some samples. It's as simple as brushing your teeth but with a cotton swab instead. You can even have a test kit sent to your home for free and send it back in a postage paid envelope. It's quick, painless and you could potentially help save a life. Please do this right away as it takes 4 weeks for the test results to come back and Harrison doesn't have a lot of time. Normally it takes 10 weeks, but they're expediting the process in hopes of finding a match sooner. Below is more information on where to go or order a home test kit.

Cross Country Donor Drives And Home Test Kits
Part of the effort to help save Harrison and others are organized donor drives across the country.
IN NEW YORK for more info including additional drives or to receive a home test kit, please contact DKMS AMERICAS at 1-866-340-3567 or emailing info@dkmsamericas.org
IN SOUTHERN CALIFORNIA please contact Marc Loresto at Asians for a Miracle Marrow Match (888) 236-4673 X172 or visit the A3M website for more local drives in the LA , San Diego and Orange County areas http://www.asianmarrow.org/drives/index.php
IN HAWAII please contact Roy Yamashiro at the Hawaiian Bone Marrow Registry (877) 443-6667 or visit their website at http://www.stfrancishawaii.org/sfhs/services/onco_bone_marrow.jsp
IN NORTHERN CALIFORNIA (Bay Area) please contact Cynthia Carlson, Recruitment Specialist at the National Marrow Donor Program ccarlson@nmdp.org or Carol Gillespie, Executive Director of Asian American Donor Program http://www.aadp.org/ or carol@aadp.org
IN NORTHERN CALIFORNIA (Merced to Oregon Border) please contact Bloodsource in Sacramento at 1-800-995-4420
IN ARIZONA please contact Oscar with NMDP at 602-242-5459 or ocorrea@nmdp.org

Spreading The Word
Besides registering as a potential life saving donor, I also encourage all the Rice Daddies and Mommies out there to help spread the word. If you have a blog or web site please include a link to Harrison's site or to one of the organizations above. With your help we can help save Harrison's life, the lives of others like him and possibly the life of your own child.

7 comments:

mamazilla said...

just an fyi - i ordered registration materials from the AADP a few weeks ago and received three packets because i thought i could register myself and my two children who are biracial.

however, the donor program is only open to people who are at least 18 years of age. so, i could only register myself since my children are still toddlers.

also, the registration package arrived very quickly. registration was quick and easy - filled out the form, swabbed the insides of my cheeks four times and popped the envelope back in the mail.

Puka said...

I've been in the bone marrow registry for a couple of years now. Definitely easy to do.

daddy in a strange land said...

I did it at a Asian American festival with Asians for Miracle Marrow Matches, because, like you, Newbie Dad, as a hapa, I was tired of seeing so many appeals by other hapas who couldn't find a match b/c of their ancestry. (Even though neither my wife or I have family histories of this kind of cancer, that experience pushed us to spend the money on cord blood banking when The Pumpkin was born.) Thanks for writing about this.

encarna said...

Oh, so easy to register! I've been a card carrying registrant myself for about a year now, because I received an appeal similar to the above. Thanks for posting it, and here's some additional info:

IN NEW ENGLAND

New England Marrow Donor Program
433 South Main Street, Suite 111
West Hartford, CT 06110
1-800-676-4545

Ka_Jun said...

Sent away for a home test kit, thanks for the info, mamazilla, I also had wondered if you could register your kids.

Ka_Jun said...

Sent my kit in today.

Anonymous said...

Another possiblity is the use of cord blood transplants as a substitute for bone marrow transplants. I'm not qualified to argue the relative merits, but it is an option. Every parent should donate his newborn's cord blood to a public bank - it's painless to mother and child, since the blood is drawn from the cord after the baby is separated. Asian American parents in particular should be doing this to increase the availability for a difficult to match demographic group. Every time I hear that somebody threw away the cord blood, I have to think: that could have been a life saved. Don't make that mistake. Ask the OB/Gyn about it.