You're not the only young person dealing with PNH. I urge you to join the group at
http://www.pnhdisease.org/index.php. There you'll find a lot of people willing to give you information and support. Sometimes one of the worst things about PNH is feeling like you're all alone because it's so rare. There are people in the PNH support group who have had PNH since they were kids, and young PNH patients and their parents who post there.
Sorry, but I don't know the answer to your question. Ask it over on the PNH group and I'm sure you'll get replies.