Imani is searching for her match

Posted June 3rd, 2011 by admin and filed in Patient Stories

Patients like Imani need African Americans to step up to donate bone marrow donorsEleven-year-old Imani looks healthy today, but her doctors don’t know how long that will last. Two years ago, she was diagnosed with myelodysplastic syndrome (MDS), a disease of the bone marrow and blood. Though Imani’s disease is mild now, her doctors are watching her closely. MDS can grow more severe over time. It can also change into a fast-growing, severe leukemia. Her doctors say a marrow transplant is the only cure.

But first Imani needs a matching donor. She is bi-racial — African American and white — and that fact has made her search for a match more challenging. Right now, the chance of finding a match on the Be The Match Registry is close to 93% for Caucasians, but for African Americans and other minorities, the chances can be as low as 66%.

A match found and lost

Even though Imani’s doctors had told her family that finding a match would be difficult, when they first searched the Be The Match Registry, they found an ideal match. Imani and her family prepared for transplant. For Imani’s mother, Tammy, it was difficult. Tammy donated marrow and saved her own brother’s life when she was fifteen. Now, twenty years later, her brother is doing well. But Tammy remembers how hard the chemotherapy and radiation used to prepare for transplant were on her brother, how hard his recovery was. It was hard to plan to put her own daughter through such a harsh treatment when Imani looked so healthy and full of energy. But she steeled her resolve and they prepared to go forward.

Then, just a week before Imani was scheduled to begin her pre-transplant treatments, they learned that her donor had fallen through. She did not have a donor after all. Because of transplant confidentiality guidelines, her family does not know the reason the donor was unable to donate.

Waiting and raising awareness

A close match between patient and donor is the most important factor in selecting the best bone marrow donor for a patient. The closer the match, the better for a patient. Imani’s doctors have identified partially matched donors for her on the registry, but Imani’s family has decided to wait to pursue transplant until a closely matched donor is available – as long as Imani remains healthy. For now, they are trying to let Imani live the life of a normal kid. She loves dancing and soccer, riding her scooter and bike, attending horse riding camp, and day camp in the summer, and spending time with her family and friends.

And Imani’s family is working with Be The Match to encourage others to join the registry – especially people of African American and mixed-race heritage. Meanwhile, Imani’s doctors keep a close eye on her disease. Every six months her doctors do a bone marrow biopsy and they check in regularly to be sure she’s not developing any new symptoms. If her MDS develops into leukemia, she will need a transplant quickly. Imani’s family hopes her match joins the Be The Match Registry before that happens.

July is African American Bone Marrow Awareness Month

Like Imani, many African Americans and other minorities can’t find marrow donors. The tissue types used for matching patients with donors are inherited, so patients are most likely to find a match within their own racial or ethnic heritage. There are 9 million people on the Be The Match Registry, but only 7% are African American. While the number of transplants that the NMDP facilitates for African American patients has doubled since 2004, more people of African American descent are urgently needed on the Be The Match Registry so that more lives can be saved.

Help patients like Imani

This July, we’re asking for your help to spread the word about African American Bone Marrow Awareness Month and the need for more people of African American descent to step up and join the Be The Match Registry.

52 Responses to “Imani is searching for her match”

  1. Sherita Howard says:

    I just read this article and will share this story with my two children who are both bi-racial, half black and half white… My children are one male and one female ages 21 and 23. I’m going to share this story with them and encourage them to become marrow donor. They both are registered organ donors and I believe they will be moved to help Imani if they can…

  2. Yvonne Caldon says:

    I wish her all the best and hope she finds a match. My mom had this and if we could have done anything to help her, we would have.

  3. Tepring says:

    I’m bi-racial Black and white(italian, english, german who knows what else) I am in the registry though so maybe you already looked through to see if I worked.

  4. Melissa says:

    According to some family records I am part Native-American, and African-American. But I’m mostly Western European I think since everyone in my family looks just plain old white. Should I have listed the other things on my profile anyway?

  5. Denise says:

    Most African Americans are mixed race. And, a good number of Caucasians. I’d be curious to have it clearer about the factors that are different. For example, not every “white” person has the same markers, right? But she’s African American and “white”. I hope this serves your purpose of encouraging more people who identify themselves are mixed race to become donors. And I hope that a match is found for 11 year old Imani. But I’m still offended by the over simplification.

    • Robert says:

      I agree that there is a tendency to oversimplify. I am “bi-racial”-African/European and Asian. I remember seeing a drive to register people of Asian Ancestry. I thought I was not needed since I am not “full blooded”. The booth worker, to her credit, said there is a shortage of minority folks of all “races”. For years I did not register because I thought I did not fit into any of the neat, arbitrary categories. I suspect quite a few “mixed” folks may react that way also. NMDP may want to consider that food for thought.

      I wish the very best for Imani….

    • admin says:

      Denise, Robert, Melissa,
      Thank you for your questions and suggestions. As you noted, in this story the information about race and matching is presented at a fairly simple level. Here’s a bit more detail:
      The matching for marrow donation is based on tissue types, specifically HLA types. HLA are proteins on the surface of cells that define “self” for the immune system.
      There are trillions of possible HLA types, but since they are inherited, it is more likely to find a match with someone of the same ancestry.

      The more information you can provide about ancestry when you join the registry the better. Not only does this information help doctors prioritize donors for further HLA typing during the donor selection process, additional ancestry information (all known sources of your ancestry) will help us understand the relationship between HLA types and ancestry.
      Be The Match

    • Joshua says:

      “Offended” wow. In the world of census within politics, socio-economic dividing lines, access health care, voting etc; yes I am “offended” by the simplification of race , but not when it comes to BONE MARROW transplants…COME ON! My ancestry is black and white or at least the simplified version of it is. If the registry did the opposite of simplification and made this complicated such as trying to verify a donor with these specific traits: 60% west african, 40% German, 10% Ashkenazi, 15% seneca and so on, I would have have stopped and said “well thats not me cant help”. But keeping it simple, “well hell Im black and white, maybe I’m a match”. Your comments may actually deter someone from helping. Think about how your words effect people because they are powerful.

  6. Ed says:

    The subjects of health and environmental health studies funded by the NIH (National Institutes of Health) often have more genetic diversity than the people on the Be The Match Registry. If we can convince the NIH to require NIH funded researchers to offer dual enrollment a significant percentage of new subjects in NIH studies could be added to the Be The Match Registry. There have also been numerous NIH funded studies where cord blood collected as a source of DNA could have been collected instead for transplantation purposes. More samples collected and people being registered through the NIH could mean fewer patients without matches.

  7. Lauren Jenkins says:

    I am B- if that is what Imani needs please let me know so I can help her. I will continue to pray for her even if I am not a match.

  8. Does the person have to be of racial color? I don’t know what kind of blood you need, I have O-negative blood. I thought O-neg mixed with anyone’s blood. I f there is anyway I can help, let me know.

    • Dina says:

      Becky, you are correct that 0 is a universal blood type, however finding a match is so much more than that. If it were as simple as a blood type then most family members could donate. This is a VERY complex process. I was a donor a few years back and my recipient was a hispanic male, I am a 40 yr old white female of German descent! It was a shock to me that I was a match for this child, but I was. Please consider signing up no matter what your background is, there is always someone out there who needs a donor and the more people on the registry the better the chances for a match! Also donation was not a terrible process and I would do it again tomorrow if needed!!

  9. Tammy Berndt says:

    Thank you to everyone who’s reaching out to help Imani. A donor is matched using what is called “genetic tissue markers”. One’s blood type does not matter because if a donor were to match (they look at eight markers, but there’s more medical coding to matching…I’m not in the field, so my explaination is way over simplified) The recipient’s blood type will change to whatever your blood type after the marrow transplant.

    The only way to know if you can match someone in need of a marrow transplant is to register to be a donor. It’s very simple to register – it’s just a mouth swab. If you are ever blessed with being able to save someone’s life with your marrow, there’s two ways they can remove your marrow – from your hip bone (in the back hip area) or by taking some medication for a few days and having the marrow removed from your blood (like a plasma donation). Although it’s a little painful to have to donate, we heal quickly. You’ll be back to your life a few days later, knowing that you helped to try and save someone’s life.

    • Maureen T. says:

      Thanks for this extended information. At the very least, it is interesting, and ultimately, it is life-saving.

  10. Lisa Butler says:

    hi just saw this story on my email. i’m on the registry – i’m african american and white mix – maybe i was checked and didnt match – or was not checked yet. i wish her the best of luck and i will (and my son will) pray for her to find that match she is waiting for.

  11. carol belyeu says:

    My daughter is African/American and white…she is going to be 15 on 6/29…how do we go about getting her tested to see if she is a match for Imani?

    • admin says:

      Hello Carol,
      Please thank your daughter for being willing to help!
      However, she must be 18 before she can be tested and join the registry. This is because a person must legally be able to give informed consent to the donation procedure. A guardian or parent cannot sign a release or give consent for someone under age 18, because unrelated marrow donation is a voluntary procedure and is not directly beneficial or life-saving to the volunteer donor.
      So your daughter will need to wait a few more years before joining. Thank you again.
      Be The Match

  12. Ernest says:

    I have been on the registry for a while. They must not be checking thoroughly

    • Dina says:

      I was on the registry 15 years before I came up as a match!!! I have a friend however who was called in just a month after siging up. It’s a little like the lottery, you just never know when your numbers are going to match to someone elses!!

  13. Jada Cowans says:

    Though I’m sure the registry has checked carefully, feel free to revisit my profile to see if I can be a match. I would love to help Imani – I am African American with a mix of Caucasian and Native American in my (fairly recent) family history.

  14. Elizabeth Olivares says:

    I would love to help Imani but what kind of donation does she need? can you explain exactly what is it that needs to be donated?

    • Esat says:

      I jnieod the Registry in 1995. I actually thought maybe my info had been misplaced somehow because I had not been contacted at all. In August of 2009 I was contacted by the Registry and asked if I was still interested in being donor as I was a potential match for 30 year old male diagnosed with Leukemia. I did not hesitate to say yes! After a another round of blood tests and a physical exam I was told I was the match and on 6 Oct 09 I was given the honor and privilege of donating Peripheral Blood Stem Cells for this young man. I pray that all went well with the recipient and that the procedure was a success. I would not hesitate to do it again. If you are unsure of whether or not to place yourself on the Registry .do it! We need more potential donors! The opportunity to be able to save a life is totally awesome!

  15. I have been on the donor list for several years. And, I have never been contacted.
    And, I am an African American..Granted that I may not be a match to the world, but surely with all the people out there that has needs. I am willing to help!
    Meanwhile, I’ll still wait my turn. And, by the way I hate needles. But, love to see someone live healthy!

  16. James Withey says:

    It sure would be cool if as possible donors we were notified when we are being considered for a match. Otherwise we just sit and wonder “Why haven’t I been Called?”.

  17. admin says:

    Hi James,
    Every time a patient searches Be The Match Registry for a donor, every member of the registry is checked as part of that search. You will then be contacted if you are ever identified as a potential match for a patient.
    Thank you so much for your commitment to staying available if you are ever called!
    Be The Match

  18. ViVi says:

    I hope all donors have been checked. I am african american, native american, portugese descent. And I have been on the registry for about 15 years and only 2 more years before I hit 60. Didn’t know about the age limit. My prayers are with Imani and her family.

  19. Mildred says:

    Hello can you please check if I match, so I can be a donor. MY information is on file..
    Please let me know..
    Thank You.

    • admin says:

      Hi Mildred and ViVi, Thank you for being members of Be The Match Registry and being ready to help! As registry members, you can be sure that you were checked to see if you were a match for Imani. As registry members, you are part of every patient’s search and will be contacted if you are ever identified as a possible match.
      Thank you again for your commitment to helping patients.
      Be The Match

  20. Shannon says:

    My prayers are very much with Imani, but I have a concern. A few months ago I received an email which stated that I was no longer being considered as a donor for a patient and thanking me. From the phrasing of the email it seemed as though I should have received an email or some contact prior to that. My attempts to reach someone about the situation came to no fruition.

    I am scared that I might have missed an earlier communication and was therefore not considered a viable prospect. I immediately checked to ensure that my contact details were all up to date.

    What is the procedure for contacting donors? Is an email simply sent out and a response waited for? If there is no response is there any follow up, ie through a phone call or home address?

    Please let me know! I am so afraid that someone may have missed the care they need because of my failure to update my contact details.

    Thank you

    • admin says:

      Hi Shannon, Be The Match representatives will usually try email first, but if no response, they will use phone and postal mail to try to connect with potential donors. I am going to pass on your concerns to our Member Contact Center to try to learn more about what may have happened in your case. Thanks for letting us know.
      Be The Match

      • Maryjane says:

        While I am sure many over the age of 60 are very fit and healthy, their stem cells are older and less apdltabae than those of younger donors. As we age our cells age and they have been exposed to more antigens. These factors increase risks for transplant patients and make older donors less desirable candidates. I do agree that if an older person is the only match that they be considered for the donation.Please don’t quit supporting marrow donation and research because you are put off by age limits- remain an active participant and voice your concerns. We all have a common goal to do some good.(My husband is a 5 year survivor stem cell donation from unrelated registry donor.)

  21. Rene Romberger says:

    I attend a diverse mixed race church. How can I set up a testing site at my church to reach new potential donors? My husband and I have been on the registry for nearly 20 years and have never been called but we stand ready to donate if needed.

  22. Maureen T. says:

    With all the arguing, violence, and self-centered people in the world, knowing that so many are willing to help this young girl is a blessing. I will do what I can for her by praying and spreading the word. I hope we will get an update on her progress.

  23. Carlos says:

    I’m so touched by this story. I hope that I can be a match for her or anyone that needs a second chance

    • Zeinab says:

      When I jnoeid the bone marrow registry in the spring of 2005 I made a commitment to be there in case anyone needed me, but my commitment started long before 2005. My commitment started before I was born, a month before my parents wedding, when my grandfather was diagnosed with lung cancer. He may have died eleven days after their wedding, and never had a chance, but there are many who do. I never got the chance to know him except through stories from my dad and a letter he wrote to his local newspaper at Christmas time. I feel closer to him when I help other people, whether it be through Be The Match, the red cross blood services, or other organizations because he liked to help others too. Even though he had little money himself, he still gave $1.50 to help others have a Christmas meal, and quoted Abe Lincoln’s story about not having shoes in his letter. It rings true to the saying it’s not what you give that matters, it’s the gift of giving itself and how could I not be thankful for my health by using it to help those who are less fortunate? If I can give anyone time with there family that I never had with my grandfather, I am only too happy to help. So thanks for allowing me to enrich others lives in such a simple and easy way.

  24. Yaneth says:

    Hi little Angel!
    Hope your find the donor soon. <3
    You know I have been in the registry for over 5 years and I wish some day they call me to let me know that I can help some one and I wish with all my heart that one day ill receive the call.. :0).
    Your name will be in my prayers tonight and every night!
    Hugs
    Yaneth

    • Qhu says:

      JenniferMy son will be two on Sunday and was saved by blood donation at birth. His hatrmoceit was 7 and hemoglobin was 2. That’s almost no blood at all. He was delivered by emergency c-section and was in the nicu for over a month. My husband and I speak at different functions for the Inland Northwest Blood Center and they have started a program called O Baby. It is for O blood types. Your blood type is so baby friendy because it is universal. Meaning anyone can have it. My son, Owen didn’t have time to get his blood typed. He needed blood right away! Thank God for his donors. We recently got a rare chance to meet his donors. There were 3. One is 17, one is 27, and one is 71 years old! Anyway that is why your blood type is so baby friendly. Thank you for all that you do to save others!!!!

  25. natarsha anderson says:

    i’m a home health nurse. and would love to help if i’m a match. i will be youre go to nurse god bless little lady. and i will be praying for you

  26. dave says:

    this is just the reason i joined, figured i needed to because of some people may back out. this little girl should not have her hopes dashed. How do i know if i could match? i have not been contacted since i joined over a year ago. ?

    • Abhinav says:

      I jnioed to help save a life. My amazing sister, Sara passed away one week ago today (8/4/11) from Acute Myeloid Leukemia. Although Sara was never in remission long enough to receive a bone marrow transplant, the doctors were still searching the databases for a match and were unable to find one. Being a 36 year old white female you would think it would be easy to find a match out of the 16.5 million people on the donor registry, but for Sara there was not even 1. Every registry counts, you could be the one that save someones life half way around the world or even the child next door. I hope that I am given the opportunity to save a life.XOXOXOXO I LOVE YOU SARA XOXOXOXOXO

  27. Roseanne says:

    If you are already on the registry and are wondering how else you can help, PLEASE consider becoming a platelets donor. My husband contracted MDS three years ago and needed platelets weekly to keep from bleeding to death. It has been very scary at times when the hospital had no platelets to give out. It takes about two hours to make a donation that is so precious to patients. Thanks!!

  28. Rachel says:

    I found this story very ironic as I kept reading. I have been a donor on the registry for quite some time now. I am also bi-racial. I am white and african-american. I have a little sister who’s name is also Imani. She looks almost identical to this little girl. I would love it if I could help this little girl and her family out, but if not I, I hope she finds a match soon. Best wishes

  29. Britteny Coley says:

    I am also Bi-Racial White and Black and Wish I was a match for this little girl. It really saddens me that I may not be able to help her

  30. RACHEL says:

    feel free to check my profile again, I’m mulatto and willing to donate!

  31. Jen says:

    If you live in Minnesota (Twin Cities) and want to be part of the Be The Match registry to help Imani, there will be a drive on August 13, 2011 at TCF Bank Stadium. For more details and to sign-up for a time to register visit http://www.keeponkeepinon.org.

  32. Tracy Bennett says:

    Are there bone marrow drives going on in Los Angeles? If so, I could let my family members as well as my church family know to attend. In the meantime, I will pray for Imani.

  33. Eve says:

    One quick question. I can not give blood because I was in Germany during the early 90′s. Can I still be a marrow donor.

  34. Larry Green says:

    http://www.facebook.com/groups/400461396665203/
    Facebook group for donor awareness through social media

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