HLA typing was done on our family and preliminary results suggest that Avery is a match for Trey. This means that now a decision has to be made regarding related Bone Marrow Transplant or unrelated Cord Blood Transplant. Finding out that Avery is a match makes things more complicated because historically BMT’s didn’t work on kids with Hunter’s and currently it looks like CBT’s might be working for kids with Hunter’s. Are CBT’s working because transplant procedures have improved, and therefore BMT’s (which are no longer being done) would work also? Or are CBT’s working because CBT’s are superior to BMT for Hunter Syndrome? Or do none of them work and we just don’t know that yet? The schools of thought are divided, which is no help to us and very frustrating considering that transplant, BMT or CBT, is a painful and risky and costly procedure.
