About Mekhi and Fanconi Anemia

A high school classmate of mine shared the note below with me and many others last November.  Last summer her young son was diagnosed with Fanconi Anemia (FA), which she explains below.  I’ve also  included a vid she provided that explains the illness.  I was really devastated to hear the news both because I dislike when children are so unwell and Sim is a single mom.  But Sim is a strong woman and has the support of her family, friends, former classmates like me, and the strong FA community.  Her note below is powerful, and a reminder that motherhood — parenthood — is not for the faint of heart.  I urge you to sign up to be a bone marrow donor, whether you’re in the U.S. or not.  Find the organization responsible and start asking questions about how you can get registered.  And, even if you don’t feel comfortable donating bone marrow, perhaps go make a donation at a blood donation center.  Help save a life.   Three year old Mekhi is now on the list for a bone marrow transplant.

As a follow up, yesterday Sim urged us to vote for the Fanconi Anemia Research Fund in through the Chase Community Giving Program’s Facebook challenge.  Please vote.  The Fund can win up to US$500,000 and that can help so many families touched by this illness as well as aid research.   All you have to do is vote through your Facebook account.  Most votes wins.  At the very least, let’s get the FA Research Fund into the top 25.  The Fund supported Sim financially when she needed it and helped her to be able to focus fully – if not totally worry free – on her son and his well-being.  So, please vote (remember to like the page first and you will need to grant the Chase Community Giving App access to your profile…at least until May 25, 2011 when voting ends) and spread the word…Facebook is still good for something!  You can learn about Chase Community Giving here and the FA Research Fund here.

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Greetings Everyone,

As some of you may know (and most don’t) … Mekhi was diagnosed with Fanconi Anemia (FA) this past July. Fanconi Anemia is a rare pre-leukemic genetic disease that affects approximately 1 in 350,000 kids.

Brief Facts on FA

FA is the result of a genetic defect in a cluster of proteins responsible for DNA repair. As a result, 20% or more of FA patients develop cancer, most often acute myelogenous leukemia, and 90% develop bone marrow failure (the inability to produce blood cells) by age 40. About 60-75% of FA patients have congenital defects, commonly short stature, abnormalities of the skin, arms, head, eyes, kidneys, and ears, and developmental disabilities. Median age of death was 30 years in 2000… considering this number was in the 20’s not too long ago I’m very hopeful J (source Wikipedia).

Mekhi is currently on the Bone Marrow Transplant list and is awaiting transplant. We will be temporarily relocating to Ohio once a suitable donor is found. During this process many of you have reached out via prayers, phone calls etc and we are soooo grateful!! Others of you have gone on to ask how you could be a donor for Mekhi, hence why I am writing this note.

 Since Mekhi’s diagnosis, I’ve met sooo may beautiful kids affected with Cancer … many of which would not have been here today unless someone like you took the time to give back.  

 Being a donor is relatively easy and painless process! It is by no means an invasive.  There is an overwhelming need for African American donors, not to mention Caribbean Donors  – the National Marrow Donor Program is dire for your donations.

 Go to www.marrow.org and register. A kit will be sent you where all you’ll need to do is mouth swab and send back to the address indicated… and that’s IT!! (for now :-).  Once it’s determined that you are a potential match to someone who’s in need, you will be contacted for further blood testing to check for more compatibility (HLA Typing).  It’s relatively simple and you would have made such a tremendous impact on the life of someone else (Like Mekhi!).

Let me end by saying… it wasn’t easy for me to write this… in fact it took me 1 week!! But I’m imploring each of you to consider this…. while our individual lives may be close to perfection, there are parents out there that loose love ones everyday! We recently lost 2 people in the FA community and was just heart wrenching. As such,  If you are in a position to help, I hope that you will consider this.

-Much Love-

Sim & Mekhi


Voting ends on May 25, 2011.  Click here to help the FA Research Fund out.  Thank you.

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Comments
3 Responses to “About Mekhi and Fanconi Anemia”
  1. Mamachel says:

    I love that you wrote about this! Good to bring light to something like this ..

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  1. […] a year ago I blogged about my high school (go Andrews at Champs!) classmate’s son Mekhi who has Fanconi Anemia.  Through the magic of Facebook, I get to see his and his mother’s progress with handling […]



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