Dore,
Do you know where the child is being treated? I am wondering why they have been told no to a BMT. I would suggest they contact one of these two centers. The center in NYC has not had a failed BMT in 14 years. If they haven't checked with Sloan Kettering about the BMT, ask them to contact SK. It is true that splenectomy does remove the need for transfusions in some with PK deficiency, so it may be an alternative.
The Children’s Hospital of Boston
300 Longwood Ave.- EN 720
Boston, Massachusetts 02115
Phone: (617) 355-2457
Fax: (617) 734-3060
Weill Medical College of Cornell University Also the home of Sloan Kettering
http://www.mskcc.org/mskcc/html/89568.cfm525 E. 68th St. Payson 695
New York, New York 10021
Phone: (212) 746-3404
Fax: (212) 746-3892