Urgent Plea for Cord Blood

[Anonymous]

This was in my neighborhood's listserve. Maybe somebody here has a match for a little girl?

Dear Friends,

As most of you know, my beautiful angel Eve is gravely ill with a very
rare and aggressive strain of leukemia. She did not respond to her
first round of chemol at all. Her only real hope for recovery is a
bone marrow transplant. Moreover, she may not have time to wait for
an actual bone marrow transplant. What she needs -- desperately -- is
a cord blood match.

Please, Please, if you banked your children's cord blood, please
IMMEDIATELY contact your bank and ask them to take a sample of the
cord blood and send it for typing for HLA-A, HLA-B, HLA-C, HLA-DRB1.

Your ethnic background does not matter. You will not be entered into
a general blood cord bank for other donees.

Please pay for whatever expediting you can.

Please call Lanier or my parents immediately to arrange to send the
results. Lanier is on 646-637-3480 or leave a message at my parents
house on 914-967-2905. one clarification: please note that you do not have to call my
parents or Lanier until you get the results. When you have the
results, please call and we'll figure out how to get them to the right
place. I cannot thank you enough for your help.

We will reimburse you for any costs.

You will still have plenty of cord blood left for your own use, God
forbid.

Please put this on the top of your to-do list. Please don't wait.
Eve really needs your help.

We are now at Columbia, by the way. And, let me take this time to
thank each and every one of you for all your help and support and well
wishes. I don't have time to read email often or to respond, but it
truly gives me strength to know that you are out there and care so much.



Thank you,
Stefanie

[Anonymous]

I'll call Viacord. We banked our son's cord blood.

[Anonymous]

i called cryocell where my kids' cord blood is stored. i was told that they would not draw from the sample. that i need to have my kids' blood drawn from their actual self. and that if it was a match, most likely it would be a one time use of the cord blood. is this what others have been told? i myself am on the marrow donor registry- i want to help eve but am unsure how i can. i think my kids' blood would need to be specifically compared to hers... she is in my thoughts.

[Anonymous]

Anonymous wrote:i called cryocell where my kids' cord blood is stored. i was told that they would not draw from the sample. that i need to have my kids' blood drawn from their actual self. and that if it was a match, most likely it would be a one time use of the cord blood. is this what others have been told? i myself am on the marrow donor registry- i want to help eve but am unsure how i can. i think my kids' blood would need to be specifically compared to hers... she is in my thoughts.

Yes. I called Viacord and I was told the same thing. Our son would need to have a mouth swab-and if he were a match, it was a one time use of the cord blood, and we'd wouldn't be able to have if for our son. Is there anyway to help other than the cord blood? How does one find out if they're a match (me)?

[Anonymous]

Wait, they advertise this so it can be used for all family members but it is only a one time use? Ugh, that is so rotten.

[Anonymous]

I'm the OP. I actually have no other information - I don't know the family so I can't ask for clarification.

I am sorry if there is no way to share cord-blood; I was really hoping it would work!

I just checked out the National Marrow Donor Program. You can have yourself typed with a cheek swab. You do have to pay $52 for the kit. Here's the information:

http://www.marrow.org/HELP/Join_the_Donor_Registry/Join_Now/join_now.html

[Anonymous]

Anonymous wrote:I'm the OP. I actually have no other information - I don't know the family so I can't ask for clarification.

I am sorry if there is no way to share cord-blood; I was really hoping it would work!

I just checked out the National Marrow Donor Program. You can have yourself typed with a cheek swab. You do have to pay $52 for the kit. Here's the information:

http://www.marrow.org/HELP/Join_the_Donor_Registry/Join_Now/join_now.html

You would think there would be enough cord blood to share if need be-I'm wondering if there's someone who knows more about this out there who can clarify. Here's yet another good reason to bank the cord blood. I know it's very expensive, but I'm so glad we did it.

[Anonymous]

I just called my registry -- CBR. They have been getting a large number of calls for this little girl and have a special recording regarding the matter saying that they will call me back. They also said that they are trying to reach the girl's parents and doctor to see what they can do to help. I will keep you posted.

[Anonymous]

I just called my registry -- CBR. They have been getting a large number of calls for this little girl and have a special recording regarding the matter saying that they will call me back. They also said that they are trying to reach the girl's parents and doctor to see what they can do to help. I will keep you posted.

[Anonymous]

Anonymous wrote:I just called my registry -- CBR. They have been getting a large number of calls for this little girl and have a special recording regarding the matter saying that they will call me back. They also said that they are trying to reach the girl's parents and doctor to see what they can do to help. I will keep you posted.

Thanks! Viacord told me the same thing-that they've received a ton of calls about this little girl.

[Anonymous]

I just called the number in the post and spoke to the girl's father (I called b/c I was concerned this was a hoax). He is overwhelmed with all the calls. He has spoken to CBR and Viacord. Apparently, there are strict regulations governing the use of private cord blood. He is still trying to work out the details and has to work through the FDA.

I urged him to post an update on this site (he lives in NY). He will try to do it tonight.

I still don't have an answer on whether cord blood can be shared in the manner suggested here. I am still waiting for CBR to call me back.

[Anonymous]

People do "donate" the cord blood, instead of banking it for their children. Hopefully, Viacord and CBR can help.

[Anonymous]

Have they tried the National Cord Blood Program?

http://www.nationalcordbloodprogram.org/

It is a non-profit facility that has public donations. This might be easier than going to a private bank, as they have about 40,000 donations, and there might be a greater match.

[Anonymous]

Anonymous wrote:People do "donate" the cord blood, instead of banking it for their children. Hopefully, Viacord and CBR can help.

Off topic but I wanted to donate my cord blood to a public bank with my 1st. I was very frustrated that my hospital did not participate in the program, it was difficult even finding information on how to do it (I called the Red Cross and that didn't help), in the end thru follow-up I was able to donate the blood cord for research. I am assuming it is due to the cost that this isn't offered but it is frustrating to be bombarded with private ways to bank blood cord and hear of all the benefits of blood cord and how this may help in situation where finding a bone marrow donation is difficult - BUT when you want to donate to a public blood cord bank to help someone else - you can't

[Anonymous]

I am guessing that this family and their doctors have gone through all of the national banks and has not been able to find a match, hence the plea for privately banked blood.

It is true, it's very difficult to donate cord blood. I did find a way (there was a recent thread) and it will go to a national bank. The company will pick up from any hospital in the country. However, OBs would do well to inform women who do not want to bank their blood about donation options.