Yes Aimee he does have classic pnh. The abdominal pain is not bad he can usual just deal with it and go to school or work or play.
As long as the Soliris works, to my knowledge he will be on it forever or till (if) he goes with the BMT his sister is a match so he is looking into that right now.
That is our current struggle do we keep him on Soliris for the rest of his life or do the transplant.