Akiko Shimamura is an excellent pediatric hematologist. She was with Boston but now is at Fred Hutchinson/Seattle Children's. You may be able to contact her through the email on this website:
http://labs.fhcrc.org/shimamura/index.html
She has been responsive to emails in the past, as she is very passionate about her field. I'd recommend contacting her for recommendations on doctors at the Children's Hospital Boston as well as for some direction on your son's presentation.
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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