I woke up on Sunday morning to some sad news. The one year old daughter of Seth Galena, co-founder of the hilarious website Bangitout, is suffering from a very rare bone marrow disorder and needs a bone marrow transplant. Ayelet Yakira is an adorable little girl, the photos Seth posts on his Facebook page always makes me grin, and it’s so disheartening to hear about her illness. Today, I learnt about another little boy named Ezra Fineman, who is also in desperate need of a bone marrow or stem cell transplant.
It brought me so much happiness to see how many people are rallying together to help with their cause! The donations are pouring in, people are going to get tested, and others are helping spread the word. Through them, I’ve learnt about GiftofLife, which is the Jewish bone marrow registry and some of the amazing work they are doing on behalf of people in need of bone marrow transplants throughout the World.
As I B”H enter my 9th month, it also reminded me that we need to make arrangements for cord blood banking. DH was surprised when I told him that I wanted to contact our cord blood bank, where we already banked the cord blood from Baby J’s birth. Most people just bank one child’s, not more than one, especially since it’s extremely expensive.
It’s true, it is extremely expensive. With a discount, because we’re already clients of this particular blood bank, it will cost us 6500 shekel plus and additional 79 shekels per year to bank this baby’s cord blood. When we originally signed up, it cost us 7800 shekel plus 79 shekels per year. That is a LOT of money for us, and even with six installments, we are going to be hurting for a while.
But what choices do we have? Both DH and I can never donate bone marrow to anyone. Because of my blood clotting disorder, I can’t even donate blood as my condition shows up during regular screening as if I am a carrier or a very nasty STD. Unfortunately, I found that out after donating a couple of pints of blood at Memorial Sloan Kettering Cancer Center. They actually threw it all away instead of giving it to the child who was waiting to receive a transfusion. (I was pretty devastated that had happened, and not just because it was a lot of blood to loose, but because the little boy really needed the blood).
As a Mother, I feel it’s my responsibility to make whatever arrangements I can to ensure the health of my children. P”G, our children will never need to use their banked cord blood. That would be an absolute blessing and I will gladly write it off as insurance money well spent. Fortunately DH feels the same way, and is on board with pasta dinners, chicken on Shabbat instead of meat, no more movie nights until we pay off this bill and any other way we can cut corners to help balance things out a bit.
And, as I wait for the box in the mail, which will be another thing to add to my hospital bag, I am saddened that we cannot be bone marrow donors for Ayelet, Ezra and any of the other children out there who need bone marrow transplants.
In the meantime, I’ll do what I can and help spread the word via my blog, Twitter and Facebook pages. And, if you are reading this and can help spread the word, or better yet sign up to become a donor yourselves, that would be amazing! Otherwise, you can do what we did, and donate money to cover the cost of these tests. It’s $54 for one kit and you can donate by visiting the GiftofLife website!
We wish Ayelet and Ezra a speedy Refuah Shelaymah!
littleduckies says
We also considered cord blood banking, but decided against it for the following reasons (besides the obvious financial one):
1) Not all the cord blood banks preserve it properly, and so sometimes, when it is taken out, it is no longer useful.
2) It is only enough blood to help until a child reaches a certain weight (the age this weight is reached is around five or six).
3) It only helps in certain cases – many times a child needs cord blood, it needs to be someone else’s, because their own has the same issue that they have.
4) One sibling’s cord blood has a 50/50 chance, on average, of matching another sibling.
5) It doesn’t seem fair to only give this service to one or two children and not the others. Banking for three, four or five children is simply beyond our means.
In other words, it *might* help that child, and *possibly might* help a sibling, but it could very well be that parents in need, ch”v, will have spent their money on something entirely useless. For these reasons, we decided not to even bother. Prayers can help just as much, if not more. And, hopefully, please G-d, we will never regret this decision.
We looked around for a national bank – this would solve the problem – but didn’t find one.
A national bank would be properly regulated to preserve the blood, and those who donated could access everyone else’s. Each donor’s family would be first on the list, obviously, and those who did not donate would not be able to receive. It would also have a clause allowing parents of a Jewish child to disallow use of the cord blood to Muslims, or some such thing. I would not want my child’s cord blood going to aid a future terrorist.
Unfortunately, this does not yet exist. But, it sure would be useful.