In the end, what matters is that you realise you can help your child and start on this difficult process. When you get the diagnosis, get off your butt and say "NO, I don't accept that this is a lifelong condition with few treatment options. I will do everything I can for my child regardless of what experts might say. I know what got my wife and I fired up and into action was hearing an early intervention specialist tell us that our boy may not be independent in the future. This was a massive kick in the guts which, I think, she knew, would spur us on. It meant we parted company after she had given us all the key resource information about treatment options and government funding but there will be many helpers along the way. Don't sit back with the view of one person and say "oh well, I guess I can't do anything".
It is true that many parents simply cannot handle the shock of the diagnosis and go into denial mode. Some people lack the resources or education to seek out the treatments and this is a great pity for their children.
It is a HARD road but if your kids emerge with a productive independent existence, isn't it worth it? Also, consider who will be looking after your kids if they are not independent after your die. It is a miracle on some scale.
