I would try contacting Rosa Acosta at St. Christophers Hospital for Children. She is the coordinator of their blood conservation program. Their medical director, Dr. Dampier has years of treating children with sickle cell.
Rosa Acosta, Coordinator
Advanced Blood Conservation Program
St. Christopher's Hospital for Children
Erie Ave. at Front St.
Philadelphia, PA 19134
Office: 800.532.1101/215.427.6505
Fax: 215.427.4822
E-mail: rosa.acosta@tenethealth.com

I am sure she will be a big help or direct you to someone who can help.
I hope all goes well.