Organ and tissue donation is taboo. For his sake and others’, that must change.
My son Mason is an energetic, funny and bright toddler. Sadly, he has a serious genetic disorder called fanconi anemia, which leaves him vulnerable to leukemia or some other health problem that could cut his life short.
There is a great treatment for this type of anemia and a possible cure for the leukemia that he might develop in the future. It’s a bone-marrow transplant — a procedure that offers my son the promise of a long, healthy and productive life.
But my family has a big problem: We can’t find a marrow donor who matches my son’s genetic profile.
Why not? Mainly because not enough people of Asian descent, particularly those of Hmong heritage, have joined the Be The Match Registry of potential marrow donors.
My family has been doing all we can to encourage people in the Hmong community to join the registry. But we’re encountering a frustrating cultural taboo within our community that discourages people from donating organs or tissue.
We also have come across a belief among some Hmong people that sick children were just meant to be that way, and that maybe it’s best to just let them go.
Well, guess what? I’m not going to let Mason go without a fight.
I cherish my Hmong heritage, but these outdated ways of thinking need to change. We have strong traditions in the Hmong community that put value on helping each other out, especially in times of need. There’s no reason we can’t extend these values to marrow donation.
This needs to happen not only for my son’s sake, but for all the other people of Asian descent in Minnesota and beyond who are searching for a cure.
The situation now creates unfairness based on a person’s race. This means that if you have leukemia or some other blood disease, your chance of finding a lifesaving marrow donor are affected by your racial background.
For example, if you’re Asian, you have a 73 percent chance of finding a match, according to Be The Match. For Hispanics, the figure is 72 percent, and for African-Americans, it’s 66 percent.
For white people, it’s 93 percent.
So imagine that you or someone you love has cancer or some other disease and you know there’s a possible cure out there, only you can’t find it. In Minnesota, there about 200 people in this situation — they might die without a marrow transplant, but they can’t find a matching donor.
Thankfully, many people of Asian descent already have stepped up to join the marrow registry. My 7-year-old daughter, Jiena, also suffers from fanconi anemia. We were fortunate to find several potential matching donors for her. Doctors are evaluating them, and we’re hopeful that Jiena will undergo a marrow transplant soon.
Still, we need to do much more to encourage Asians to join the Be The Match Registry. It’s not hard to join. All you do is fill out a form and get your cheek swabbed. You can go to BeTheMatch.org to find a recruitment center or a marrow registry drive near your home. You can also get a registration kit mailed to your house.
If it turns out you’re a match for someone, donating marrow is not a scary thing. In most cases, you make a donation through a process that doesn’t involve surgery. And the costs are covered, so you don’t pay to donate marrow.
Getting more Hmong people to join the registry will require us to change some attitudes. I know it’s difficult. We had to confront outdated attitudes within our own family. Even in my own heart I needed to overcome the shame of having sick children: We didn’t tell anyone about our kids’ conditions until it became clear we needed help finding a match.
So let’s work together to make the cure for blood cancer and other blood diseases available to my son and everyone else in need. You can help either by joining the Be The Match Registry or consider making a contribution that helps the organization add people to the registry.
Maly Lee lives in St. Paul.
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