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November 3rd, 2010
04:19 PM ET

Starlet's death spurs interest in bone marrow donation

The death of a young star of the Broadway's "The Lion King" has drawn attention to the lack of bone marrow donors, especially for minorities.

The news that Shannon Tavarez,11, had passed away, prompted  some CNN.com readers to pledge to sign up to donate.

Doctors had been unable to find a bone-marrow match for Tavarez who had acute myeloid leukemia. She received a transplant from an umbilical cord in late August as an alternative.

Here are some of your comments:

Lakerboy: I lost my son to AML in July of 2009. He was 22 years old and fought a very difficult 26 month battle against this horrible disease. I beg of anyone who reads this message, to please become a bone marrow donor. It is an incredibly simple process, similar to donating blood.

My son did receive a bone marrow transplant in October of 07. He did beat the cancer, but unfortunately was taken by complications of all the treatments he had to endure. I am so very thankful to the anonymous donor, who gave my son an extra two years to live. Every minute of those two years was so very precious to both my son and I. Thank you to all of you who have already become a donor or will be doing so in the near future. God Bless You and God Bless the Family and Friends of Shannon, such a brave young lady!

Sybaris : I registered with the C.W. Bill Young Department of Defense Marrow Donor Program about 8 years ago. I was called on to donate within a year. The whole process is done anonymously to the donor and recipient. After a year there is the option for the donor and recipient to contact each other. We did. My marrow went to a 4 year old boy with terminal Monosomony7. He is now a healthy thriving 11 year old. Participating in the BMDP was the most worthwhile thing I have ever done and I encourage everyone to at least learn about the program and consider participating.

Savannah416: Everyone: if you have not already, please consider becoming a blood marrow donor, particularly if you're a minority because their databases are woefully in need of more donor candidates. A simple cheek swab is all it takes to become a potential candidate, and the payback is immeasurable if you can save a life. less

Guest:
I just signed up, thanks to one of the commenters below who provided a recommended site (marrow dot org). The process only took about 10 minutes; now I will just wait to receive my kit in the mail.

The first step to become a bone marrow donor is to join a registry .

Doctors around the world search the registry to find a match for their patients. The majority of donations do not involve surgery.  Doctors most often requests a peripheral blood stem cell (PBSC) donation, which is non-surgical and similar to blood donation.

For more information: DKMS Americas and National Marrow Donor Program


soundoff (28 Responses)
  1. klebinek

    Another disease that needs more attention.
    http://crohnsdiseasediagnosis.blogspot.com/

    November 3, 2010 at 18:21 | Report abuse | Reply
  2. jim

    OKAY.. Signed up. But how many of us are out there that would like to, but had never heard of ways to become a donor?
    If it really is as simple as a blood donation, why the heck aren't all Americans lining up ??? Couldn't someone have made this info more available? Why are there so many facebook, youtube nonsense traffic/adverts, but no info on this that can save lives??? Messed up priorities is why.

    November 3, 2010 at 19:14 | Report abuse | Reply
    • anotherdonor

      Good point that the word should be spread. Do tell your friends, pass it on FB or Twitter or at the water cooler at work.

      I'm not sure who that "someone" is supposed to be – other than you and I. The government tries, but people seem to hate whatever the government does these days. Does your workplace advertise? Maybe they should? I first heard about it in college, through friends who were registering.

      The National Marrow Program does advertise – but can't afford fancy TV ads like corporations or politicians. Their budget is barely sufficient for the actual process of facilitating donations. That's why they often request a financial donation with your registration. That seems to turn some people off, though given your enthusiasm about learning about this option, I don't understand why it should.

      November 4, 2010 at 02:51 | Report abuse |
  3. Guest1120

    I received a bone marrow transplant in June 2008 from my sister who had just given birth to her second child 4 months earlier in February. She saved her brother's(me) life. My sister, just 4 months out from delivering a baby, was able to donate these stem cells mostly because this process is simple and painless similar to donating blood platelets. After 12 months, the patient can find out who the donor is and can arrange a meeting. If you are the donor, this is one of the most incredible feelings of your life! Please please sign up on the national donor registry soon! Thank you.

    November 3, 2010 at 19:14 | Report abuse | Reply
  4. brittany

    this is such a sad story shannon is so brave it so sad that she past away i just want to tell her family that god is blessing you by keeping you healthy and strong and god bless you shannon family

    November 3, 2010 at 19:34 | Report abuse | Reply
  5. Barbi Rodriguez

    My daughter Maggie died a few weeks ago. She was an organ donor and so far has saved two lives. Please visit her website to learn more about organ donation and also to Light a Candle in Memory of your loved one. http://www.organdonationmaggie.com. Please don't take your organs to Heaven, God knows we need them here. May God bless this beautiful child and give her family peace and comfort.

    November 3, 2010 at 19:38 | Report abuse | Reply
  6. BT

    Shannon was a special person, a gem, a star and now an angel! My wife and I were inspired by her story and went into the city to be tested during the first drive. While there we ran into many of Shannon’s friends and family who had volunteered to help DKMS with the effort. I recall all the love and hope there was in the air that day and we all felt she would definitely find a match. I myself was hoping it would be me. Unfortunately we couldn’t find one. But if I can say one thing that may help her friends and family cope, is that beyond her talents I know that Shannon had a special purpose.
    Just last week DKMS called me to tell me I was found to be a match for a 3 year old girl . I immediately jumped at the opportunity. I can’t say the joy I felt that I may be able to help this young girl live and this is all because of Shannon!!

    We Love you Shannon and thanks for being you!

    Bert

    November 3, 2010 at 21:37 | Report abuse | Reply
  7. QP

    After reading the story about Shannon, I immediately signed up...I am awaiting my kit in the mail!

    November 3, 2010 at 22:53 | Report abuse | Reply
  8. John Covert

    I was a long time bone marrow donor, BUT have been removed from the list of eligibility. You see, I served in the Air Force for 21 years, and for four years, I served in Europe. Now, because of my service, I (along with my wife and two kids) are all ineligible to donate. Never mind that we all donated for years before this stupid rule.

    November 3, 2010 at 23:15 | Report abuse | Reply
  9. Janice

    RIP Beautiful Little Princess. I was the one who registered at St. Malachy's who met your wonderful family who looked after my dog as I swabbed. I am honored to have become a bone marrow donor for your cause. My heart goes out to your family and friends. May your soul rise and your spirit soar!!

    November 3, 2010 at 23:18 | Report abuse | Reply
  10. MJ

    I signed up my freshman year in college when there was a drive to register people for the national bone marrow registry at one of the campus blood drives. It was something I had wanted to do before then, but didn't know how. I haven't gotten a call saying I am a match to anybody in need. While I wish this was something there was no need for me and I would never wish somebody to be in the situation to require a bone marrow transplant, I do wish to be able to help somebody that is.

    November 4, 2010 at 02:58 | Report abuse | Reply
    • Alban

      Bob: I read with great interest your rest day rnifectloes. How poignant! I connected with your story earlier this month when Dorothy posted your website on her Facebook page. I have been following your journey ever since. I am in awe of all that you have been through and all that you have overcome. We have come a long way since high school, haven't we? Wishing you the best of luck in all your endeavors. Rejoice when you arrive in Key West! Joan (Rietmann) Duke

      December 21, 2012 at 08:05 | Report abuse |
  11. tillzen

    I registered 17 years ago and I update my status often.

    To those who are baffled about how or where to help ANYTHING; use the web.

    There is so much need out there and I urge those who feel helpless or angry to jump in and fix ANYTHING.

    Bone marrow donor or blood donor or organ donor are EASY ! Organ donor is next but if you can't stomach it, then at least start talking about it with family and friends.

    You are sad and feel helpless but perhaps this lovely girl's loss might inspire millions. Let's go!

    November 4, 2010 at 04:00 | Report abuse | Reply
  12. mtngrrll

    I have always been registered as an organ donor with The Living Bank organization in Texas, until I was diagnosed with breast cancer in 2008. I do not know if that also makes me ineligible for bone marrow donation or not – the cancer did not metastisize. Does anyone know?

    November 4, 2010 at 04:21 | Report abuse | Reply
    • Amy

      Go to marrow.org. There you'll find anything that could exclude you from being a donor. You can also just contact the Nat'l Bone Marrow Donor Program via their 1-800 number and ask. They are super-helpful!!!! 1 (800) MARROW2 (1-800-627-7692)

      I was registered until I was diagnosed with Fibromyalgia. So, my goal since having to be removed from the registry has been to get as many other people registered as possible!

      November 4, 2010 at 10:42 | Report abuse |
    • christine

      I believe the breast cancer would have to have been stage 0. Even if you can't donate, please spread the word & ask friends, family & co-workers. The biggest issue is the misperception of pain from donating. They DON'T shove a needle in your back- it's very similar to giving blood. Thank you!!!!!!!!!!!!!!!!!!

      November 4, 2010 at 14:18 | Report abuse |
  13. TDK

    Ive followed this stroy and it hurts to hear. My wife needs a donor and after 8 years, we still have no match. I started http://www.racingtoregister.com to motivate poeple to register. I have been travleing the world to compete in Ironman and marathon races, and registering people at races. PLEASE consider registering.It takes 5 minutes to save a lifetime.

    November 4, 2010 at 06:41 | Report abuse | Reply
  14. Dove

    I signed up and within a month was matched. My recipient and I came to know each other after the one year waiting period and he has been in remission for five years. It is the most rewarding experience of my life.

    November 4, 2010 at 10:04 | Report abuse | Reply
    • Phumuzo

      Janice is right! It has nothing to do with blood types. It is all about HLA types, which sdntas for Human Leukocyte Antigens. These are antigens which are encoded for by genes on the sixth chromosome. This is why they only need a cheek swab to get a DNA sample rather than a blood sample for HLA typing. When a person is told they are a match, this simply means that they are a match for the 6 HLA antigens that they test for: 2 HLA-A, 2 HLA-B, and 2 HLA-DR to be exact. This still doesn't mean you're a perfect match because although you have the same 6 antigens, the genes that code for those antigens are not the same in two non-related individuals. Where as if a sibling is a match for those 6 antigens (like Janice was for her sister), that means she is genetically identical for those six atigens. And that is very important because when a patient is lucky enough to have a sibling who is a match, they are much less likely to reject the transplant than if they were to receive it from a non-related donor who is only phenotypically matched rather than genetically matched, if that makes any sense to everyone! But ultimately, what you guys are all wondering is what makes you more or less likely to be a match for a perfect stranger. Well, just like certain blood types are more common, certain HLA types are also more common. And most importantly, people of the same race and ethnicity are more likely to have common HLA types than people of different ethnicities. Thus, a Caucasian person of German descent is far more likely to be the match for another German than for say an African American, a Vietnamese, or even an Italian patient in need of a transplant. And this is where you can help out most! There are certain ethnic groups that are heavily underrepresented in the registry and 2 of those groups are Asians and African Americans. There has been a large effort in Southeast Wisconsin to try to raise awareness about the registry in Asian populations to get more people to sign up because there are so many Asian patients waiting to find their match! All it takes is a cheek swab to register, so please spread the word especially to people who you know who are of the ethnicities I mentioned above!

      March 6, 2012 at 00:42 | Report abuse |
  15. Anon

    Not everyone can donate, but everyone should look into it. African-Americans are more likely to match other African-Americans. That's one of the reasons for this tragedy; there aren't enough African-American donors available. Live bone marrow donation is painful but not as risky as kidney or liver donation. And marrow grows back.

    November 4, 2010 at 10:21 | Report abuse | Reply
  16. Jessica

    Another disease that needs more attention – Osteogenesis Imperfecta (Brittle Bone Disease) – Visit oif.org – My daughter was born with Type IV, and we had never heard of it before!

    November 4, 2010 at 10:45 | Report abuse | Reply
  17. Heidi

    I am registered with bethematch.org. After reading this story, it reminded me to update my contact information. I hope that those reading this story are either inspired to register or remember to update their information.

    November 4, 2010 at 14:35 | Report abuse | Reply
  18. Belinda

    I'm ineligible to register due to my history of kidney disease, but prior to my illness, was registered. Also, if you can, donae blood or plasma. Both blood transfusions and infusions of antibodies helped saved my life. Once considered terminal, I now ride my bicycle in 100+ mile events for charities.

    November 4, 2010 at 14:47 | Report abuse | Reply
  19. ms yellarose

    This was heartbreaking to hear. This baby didn't survive this nasty disease, but perhaps through bone marrow donation we can save many others.

    November 4, 2010 at 15:08 | Report abuse | Reply
  20. Minnesota gal

    I have been a registered donor since 1991 and have kept my file updated (most recently Jan of 2010). Almost 20 years and no call about being a match. I know one day I'll make a difference in someones life.

    November 4, 2010 at 15:44 | Report abuse | Reply
  21. Bernie

    I enterred the Program as a potential bone marrow donor 20 years ago and pray that during my lifetime I can donate marrow in order to give an afflicted individual a chance at a normal life. I encourage all to donate a specimen and if a match is found, to donate marrow. The risk to the donor is minimal, but the chance to save a life is unbelievably rewarding.

    November 4, 2010 at 15:56 | Report abuse | Reply
  22. Barbi Rodriguez

    It is rewarding to be an organ donor. I posted above about my daughter Maggie dying a couple of weeks ago. Yesterday, we received a letter from LifeQuest saying she saved three peoples' lives. Details are on her website http://www.organdonationmaggie.com. I'm honored that Maggie's life goes on in those 3 lives she saved! Those families are not going to be experiencing the agony that I have felt. Thank God. This child had some a beautiful smile. Heaven gained another angel.

    November 12, 2010 at 10:09 | Report abuse | Reply

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