Anything worthwhile takes time, effort and sacrifice, I slightly recall my father saying to me as a young boy. No different really then navigating through life when a loved one has a rare disease. So many people set up boundaries things that "cannot" be done. Never let anyone judge what your child is capable of achieving. It's hard with all the medical advice carrying over on a day to day basis. But don't doubt your child has a voice, can be heard and should be heard!