Heaven gets an Angel
We lost a little one to Shwachman Diamond Syndrome today. His name was Zion and he was undergoing a marrow cell infusion. His mom was the donor. He has had a quite a battle the last few weeks but his body just wasn't able to handle the process of transplant.
Only 50% of children with SDS who undergo transplant survive. It's such a sad thing to come so close to relief from the bone marrow problems only to lose them. Research is so important! We are blessed to be hanging in there. The longer the kids can get by, the better the odds of survival if the day comes that they do need a transplant. Heaven forbid. I am so grateful for the people who are spend so much time raising money for SDS. The Butterfly Guild and Shwachman Diamond America are just two organizations that do so much good and my hats go off to them.
Prayers go out to Zion and his family. Thanks for fighting with us.
Only 50% of children with SDS who undergo transplant survive. It's such a sad thing to come so close to relief from the bone marrow problems only to lose them. Research is so important! We are blessed to be hanging in there. The longer the kids can get by, the better the odds of survival if the day comes that they do need a transplant. Heaven forbid. I am so grateful for the people who are spend so much time raising money for SDS. The Butterfly Guild and Shwachman Diamond America are just two organizations that do so much good and my hats go off to them.
Prayers go out to Zion and his family. Thanks for fighting with us.
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