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Julie,
I know the pain that you are going through because my 2 year old son was also diagnosed with MDS in January. I live in Florida but our son's hematologist has been in contact with the pediatric hematology department at the Boston Children's Hospital. They have a physician in their department that specializes in children with MDS. While the only cure is a bone marrow transplant there are ways to treat the symptoms and help your baby feel a lot better.
The most important thing to find out is if your baby's MDS is low, intermediate or high-risk MDS as it will give you an idea of your son's prognosis and how best to treat the disease.
If you have any other questions feel free to send me a message or an email. My prayers are with you and I hope for the best for you and your son.
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