hi. i've never been so desperate in my life so i'm gonna have to say this.
having a child with something else is already devastating. what's worse is knowing that even the doctors in your place have no idea what to do to help your child or cant even give any helpful advice for management or just anything to ease your worry and all. the worst part is finding out that there are doctors out there who CAN help us out yet reaching that kind of service is next to impossibility just because you cant afford it. and its killing me.
so I wanna ask: is there any foundation or charity or anyone/anything who provides medical assistance to children with BWS?