Joey is living at the moment with a possible ROHHAD diagnosis.
Joey is known for his sweet personality. He loves helping others. He enjoys playing outside and riding his bike. Right now he says when he grows up he would like to be a fireman ( but that has changed a few times 😀).
As his mum I pray daily for some kind of cure. Its hard watching him struggle and his weight is putting alot of strain on his already compromised body from a neuromuscular disease. He is suspected to have ROHHAD. He started growing at 3 1/2 yrs and hasnt stopped.
Please help us understand ROHHAD better and find a cure for my son and all the ROHHAD children.
Love Joey’s mum