The Places You’ve Come To Fear The Most

Just around this time last year, I jotted down an ambiguous entry about life and how we are all so fortunate to be alive and well. I often find that we (including myself) overlook the simplest of blessings and take much of what we have for granted. Until, of course, we are tragically reminded of the value of life.

This entry is about my 19-year old super cousin who has been diagnosed by acute lymphoblastic leukemia (or simply known as ALL) for just over a year now. After an unsuccessful bout with chemotherapy, he now desperately needs a transplant. Unluckily, his younger brother is a 0% match and I am only a partial match. Although I am a potential donor, the already slim chance of success is diminished by partial matches as opposed to a perfect match. For those that are interested, this is what Wikipedia has to say about possible donors:

A major limitation of allogeneic bone marrow transplantation is a shortage of donors. To avoid rejection of the transplanted stem cells or severe graft-versus-host disease, the donor should have the same human leukocyte antigens (HLA) as the recipient. About 25 to 30 percent of potential HSCT recipients have an HLA-identical sibling. For other recipients, registries of volunteer unrelated donors can be quickly searched in order to find a potential HLA match. If an exact match cannot be found, a partially matched donor can be used. However, the use of mismatched donors may increase the risk of graft rejection or severe graft-versus-host disease.

A compatible donor is found by doing additional HLA-testing from the blood of potential donors. The HLA genes fall in two categories (Type I and Type II). In general, mismatches of the Type-I genes (i.e. HLA-A, HLA-B, or HLA-C) increase the risk of graft rejection. A mismatch of an HLA Type II gene (i.e. HLA-DR, or HLA-DQB1) increases the risk of graft-versus-host disease. In addition a genetic mismatch as small as a single DNA base pair is significant so perfect matches require knowledge of the exact DNA sequence of these genes for both donor and recipient. Leading transplant centers currently perform testing for all five of these HLA genes before declaring that a donor and recipient are HLA-identical.

Race and ethnicity are known to play a major role in donor recruitment drives, as members of the same ethnic group are more likely to have matching genes, including the genes for HLA.

There is a massive push in my extended family to have everyone tested. This includes everyone ranging from the age of 2 to 70 (worldwide). Since time is of the essence now, I’m going around and asking some Iranian friends of mine if they would be willing to get a blood-test to see whether or not they are a potential match for my cousin. My family is willing to pay for the procedure and, if a match is found, is also willing to pay-out an award. I personally cannot imagine anything more gratifying than knowing you saved a young kids’ life, but I do understand the allure of a financial incentive.

I really wish I was a perfect match as it would have given my life at least some meaningful purpose. I am taking this opportunity to be more involved in these things, as although I may not have been a perfect match for my cousin, I realize I am probably someone’s perfect match somewhere. I want to help anyone who could be in my situation.

Adieu. Navid.