I was just talking about this with my son's doctor on Friday's visit. My son had about a 20% PNH clone in May and they drew blood to see if it increased on Friday. I asked if the ATG/Cyclosporine will work given the PNH and our doctor said she thinks it will, because this kind of PNH is secondary to the Aplastic Anemia. It gets confusing because PNH is also an actual primary disease that can also depress the bone marrow. We've had a tussle with insurance where they don't want to pay for the ATG/Cyclosporine (my son's first dose) so his treatment has been delayed, but hopefully we will start shortly. I know it is a tough decision and I will struggle with it, too, if/when it happens. From this article it looks like the medical community has gotten much better at MUD transplants over the years. I'm less scared of it than I was in the beginning but I still don't want my son to have to do it :-(
http://bethematch.org/Physicians/Unr...bling.aspx#SAA
Severe aplastic anemia
Matched related donor hematopoietic cell transplantation is the treatment of choice for pediatric patients with severe aplastic anemia (SAA). A 2006 study of 36 pediatric SAA patients demonstrated no significant difference in four-year overall survival between related and unrelated donors (93% vs. 89%, respectively; p=ns). [19]
Good luck with your decision! I think in your case both decisions would be a right one.