A few days ago my nephew (3yrs old) was diagnosed with ROHHAD and we are overcome with the lack of information we have been able to gain thus far. We are hping to be able to get information on the dissorder and interact with people wo have experience with the dissorder. If anyone is able to help us we would very much appriciate it. My nephew it still in th PICU at childrens and it is a very scary time for all of us. Please help.