Okay, so a recent issue of Newsweek featured an article about banking stem cells and whether or not it was all just a marketing scheme. I do really understand the concern - the marketing for these banks is pretty heavy duty and they do make some... overreaching claims. On the other hand, as you can all well imagine, I'm very positively inclined toward the idea of banking stem cells. SO I wrote a letter to the editors at Newsweek which I'm included below. (I actually have had a letter published in Newsweek before so I don't know it that counts for or against a repeat showing).
If you'll read the article (http://www.newsweek.com/id/174276), they actually specifically talk about the Duke program and quote Dr. Kurtzberg who did Noa's infusion. She is not a big fan of the banks' marketing and does warn parents against spending the money unnecessarily - and I totally respect her point of view on that. She has seen a lot of parents with unrealistic expectations, often fed by the banking company's heavy duty marketing and I do think that makes her job harder. She doesn't want to promise people things she can't deliver and was very clear with us about this and really really really appreciate that. On the other hand, from a parenting point of view, I can't imagine how I'd be kicking myself now if we'd decided against banking the stem cells.
Any-who, my letter follows:
To the Editor:
As the parent of special needs child who recently underwent a stem cell infusion under the care of Dr. Kurtzberg, I read Mary Carmichael’s story on banking umbilical stem cells with great interest. Unfortunately, Ms. Carmichael left out an important element in what was an otherwise very informative piece and that is, for new parents living in the here and now, the fact that they may be able to do more “someday” or using other forms of stem cells, or donated cells, is pretty much a moot point. My daughter is here now, blind and with multiple delays and disabilities. She is young and her brain is still developing so thank goodness we banked her stem cells. Did my daughter’s infusion work? I don’t know. It’s too early to know, though we do believe we’ve seen some positive changes. But we will probably never know with scientific certainty. Dr. Kurtzberg is very correct to keep parents’ expectations in check. Those going into something like this should have no illusions. But when Ms. Carmichael asks if parents are willing to take that leap of faith…? When you’re faced with a seriously disabled child leaps of faith are sometimes the only leaps that you CAN take. I recently chipped into to give a my brother and sister-in-law a gift of stem cell banking and I’ll tell your readers (who can afford it) what I told them: bank them for a few years, and if you feel your child is developing “normally” or the scientific developments make keeping them unnecessary, then donate them to a public bank or for scientific research. In either case, it’s a good and very worthy investment.
Sincerely,
Jeni Mahoney, New York
1 comment:
Great letter.
Post a Comment