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Old Mon Nov 17, 2008, 02:45 PM
mom2c2008 mom2c2008 is offline
Join Date: Jun 2008
Location: crown point indiana
Posts: 2
Question Is there anyone who has a child with MDS?

This disease is so rare in children. I have a 7 year old daughter who was diagnosed in January 2008. She had a BMT is April and relapsed in July 2008. She was then infused again in July with Tcells and started GVHD in August. Overall this was a terrilble year for us but I am happy to say her engrafment is up to 99% and the GVHD is getting better. The runx1 gene that cause all this is gone also. I just want to know if anyone has a child who has beat this terrible diease? All the stats on long term survival in children are not good.
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