|
I'm so sorry you and your baby are going through this. It's bad enough when it's for an adult to be able to deal with this disease.
I live in Australia so I won't be any use to you but I Googles pediatric MDS and got a site for Boston Children's Hospital where they claim to specialize in pediatric MDS.
I don't know if they are as good as they say, you cant trust self promotion but maybe someone else here has some more information for you.
Best of luck.
Regards
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
|