M.O.
Hello,
I do not have personal experience with this, but do have an older friend who has raised a child with this syndrome. She is the very helpful sort and would probably be willing to speak directly to the parents of this child and those involved in his care. I will speak with her about this and how she would like to communicate if you would like to speak with her. Please let me know if there is a way outside this forum that you would like to communicate with her.
M.