Be the Match – Become Part of the Bone Marrow Registry
Tuesday, July 3, 2012 • 4:29pm
I first met my friend Bob Larkin at Cameron Field in South Orange back in 1975. At the time we were both aspiring soccer players who would later go on to win a state championship playing for Columbia High School in 1978. Bob moved to San Francisco about fifteen years ago and is living there with his wife Kimberly and their three children, Kyle, Catie Jo, and Jake.
This past January, Bob and I got together with some other alumni from our team to play in the King Cup Tournament in Las Vegas. It was a fun time, and even though we had to play four games in two days at our age, it was great to reunite with some of our former Columbia teammates. At the end of the trip, we said our goodbyes and pledged we’d do a better job keeping in touch with one another. Little did we know that within three weeks we’d receive some troubling news from our friend Bob.
On Feb. 17, Bob’s son Jake was diagnosed with Aplastic Anemia, a rare condition that strikes an average of six to nine people per million a year globally. It strikes swiftly and with little warning.
Please take a moment to view this three-minute clip on Jake that recently appeared on Good Morning America.
Aplastic Anemia is a condition where the body's bone marrow doesn't make enough new blood cells. Like Jake’s, most cases are idiopathic, that is, it has been spontaneously triggered by an obscure or unknown cause, as opposed to genetic. Jake’s condition is labeled severe. His bone marrow has completely stopped producing any new red or white blood cells, as well as platelets.
To complicate things further, without the immunosuppressant drug treatment he’s now on, Jakes functioning T-cells (a type of white blood cell that make up the immune system) would be attacking any new or transfused blood cells “thinking” they were an alien substance -- bacteria, virus, fungi, etc. -- invading his system. Jake is just 5 1/2 years old and currently surviving on weekly blood transfusions.
Television personality Robin Roberts of Good Morning America recently shared with her national audience that she was diagnosed with a rare and often fatal blood disease called MDS. The best odds for survival for patients like her and Jake is a bone marrow transplant.
You see, there are some seventy life-threatening diseases out there that require a bone marrow transplant. Since Roberts’ announcement, bone marrow registration has increased over 300 percent in just the first few days. However, finding a match is not as simple as finding someone with the same blood type. It is the proverbial needle in the haystack.
Only one of every 540 registered bone marrow donors will actually get the opportunity to donate their marrow due to the inherent difficulties in finding a suitable match. A successful donor for Jake must match ten out of ten points to be a perfect match. Even with siblings, there is only a 35 percent chance of matching on all ten points, and neither Jake’s sister nor brother is a match.
Today there are thousands of families like the Larkins who are waiting for the call that a bone marrow match has been found. For them and many others, they are up against the calendar, and the window of opportunity is getting smaller every day. Surviving on weekly blood transfusions can only buy time for so long. With each transfusion the risk of Jake’s body ultimately rejecting any future bone marrow transplant increases. In order to better the odds of finding a match, the number of potential donors in the world’s marrow donor registries must be increased. So far, out of the more than 13 million registered donors worldwide, only one matched Jake, a woman in the U.K.
Sadly, since this woman registered with the U.K.’s Anthony Nolan marrow registry [http://www.anthonynolan.org] she has moved and did not update her forwarding address, and as it turns out, she turned 61 this year and is now too old to donate.
So yes, the needle is small and the haystack is the globe, but we know Jake’s perfect match is out there somewhere, and believe it or not that perfect match could be you.
So the call to action is this:
1. Ask that everyone who is able to donate bone marrow to get swabbed and registered with the Be The Match marrow donor bank.
2. Spread the word. Join, “like” and “share” Jake’s Facebook page [https://www.facebook.com/MatchJake].
3. Attend a public bone marrow registration drive in your area (see below). Testing is completely painless and free. If you are between the ages of 18 and 60, and meet the health guidelines for donation, all it takes is a simple cheek swab and filling out a registration form. You may get contacted in two weeks or 20 years or not at all. But if you’re one of the lucky ones and your marrow matches a patient in need, you get the chance to save that person’s life by doing nothing more than taking a few more tests and donating blood. The side effects of donating bone marrow are no worse than having a tough cold. Compared to the gratification of knowing you stepped up to the plate and saved a life, that’s well not a bad trade.
List of upcoming events in Jake’s name:
Springfield, N.J. – MatchJake Fundraiser
Sunday, July 8, 11 a.m. to closing
250 Morris Ave, Springfield NJ
Contact info: email@example.com
Summit N.J. – MatchJake Bone Marrow Drive
Sunday, July 15, 12 - 4pm
Summit Volunteer First Aid Squad Building
54-56 Elm Street, Summit NJ
Contact info: firstname.lastname@example.org
Take the first step right now.
1. Order your swab kit.
2. When it arrives, open it, swab, and put it back in the mail (postage pre-paid).
3. Spread the word
4. …maybe save a life
For more information please visit www.matchjake.org and join Jake’s Facebook page.