Is there anyone who has a child with MDS?

[mom2c2008]

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.

[Neil Cuadra]

I'm glad to hear that things have gotten better for your daughter since your post in June.

We don't often hear about pediatric MDS, so you might try connecting with other families that have had pediatric transplants or are dealing with GvHD, even for other diseases.

Have you asked the National Bone Marrow Transplant Link whether there's anyone in their Peer Support Group who has dealt with pediatric MDS?

[cola1988]

I just found your message and was wondering how your daughter is doing. I only check up on here every couple of months. My daughter was diagnosed with Aplastic Anemia but was showing MDS traits so she was technically borderline and they did the transplant as soon as possible because her brother was a 10/10 match. She had some changes in her cells but I'm not sure whether or not her chromosomes were affected before the transplant. She was transplanted 2 years ago, with no major problems. She has a large lymph node they are watching in her neck and some dry skin, which they are attributing to GVHD but other than that she is a normal healthy 8 year old. I had a hard time finding children with this disease also. If you would like to talk, my email is cola_1988@yahoo.com. I check that much more frequently than I do this. THanks, Nicole

[Neil Cuadra]

Forum member Stephanie posted today about her son's pediatric MDS.

[kirsty]

hi there just joined the site i have 2 little boys with mds one is 6 and had a sucessful transplant 6 years ago just had a little boy he now has mds would love a chat kirsty