One thing I have wanted to do more of is advocating. And so today's post is advocating for the National Marrow Donor Program. Many families with Ds and without rely on them to save lives.
In the beginning, when you first get your diagnosis of Down syndrome, you also get a LOT of information. Some comes from doctors that don't KNOW life with Ds kids. Some comes from google searches. The best comes from FRIENDS! Our "friends" live all across the country and they blog about everyday life with their children and we reap the benefits of ideas and questions and answers and so much from them.
Unfortunately we learn about the bad things too, like leukemia.
This past year, we have seen three of our friends battle and BEAT cancer! Ella Grace and Emily and Abigail. We actually got to meet Ella Grace and see how great she is doing this summer. A couple hours at the beach together and this was the best shot I had of the two girls:) More interested in exploring the beach than having a photo shoot.
While they have won the battle, there are some who are not winning the battle and need help from you to save them.
It’s been a documented fact for decades that children with Down syndrome have a 10-30% higher incidence of developing leukemia then typical children. The good news is that, although scary, it's pretty rare, even in children with Down syndrome. About 1 in 95 will get it (compare this to 1 in 2000 in typical children).
How high is the cure rate? There are different forms of this cancer. The two types that children get are ALL (acute lymphoblastic) and AML (acute myeloid). ALL survival rate is about 90% for kids under 5. AML survival rate is about 55% for kids under 15, EXCEPT for children with Down syndrome--their survival rate with AML is 85%.
For children with Down syndrome, leukemia treatment is more successful than for other kids. It's likely due to a genetic mutation found only in Down syndrome children, new research shows. However, the same mutation also increases the kids' leukemia risk.
(information taken from this website: http://www.down-syndrome-facts-and-fiction.com/leukemia.html)
So how can you help? Make an easy life changing decision! Join the National Marrow Donor Program!
Successful bone marrow transplants are often the only way to fight this disease. Joining is free and easy and you could be saving someone's life someday...you could be the match for one of our friends...and hopefully NOT, but you could be our match someday...
You will simply fill out the forms online, they mail you a kit, you swab your cheek and send it in. It is that simple. If you are pregnant, you can also store blood cord for future use in your own family, or even DONATE your babies blood cord to help save someone else. Be someone's hope...the answer to their prayers.
Do it for our friends. Do it for Aubrey and all those other littles out there, with and without Down syndrome who are waiting on a match.
Click on Aubrey's button (on the right side bar) to take you to the National Marrow Donor Program site to join.
Be SOMEONE's match.
Sunday, October 2, 2011
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Thank you, thank you, thank you for posting about this! Thanks for your comment about the walking and glad to hear we are not the only ones struggling in this area :-)
ReplyDeleteKelli @livinglifewithes