My daughter is terminal with Walker Warburg syndrome and severe hydrocephalus, she has had brain surgery as well as stomach surgery, she's completely blind from the damage of hydrocephalus,  she cant move any of her body except the movement from her sever seizures she has daily that causes her to have hard time breathing and will ultimately the way she passes. Once a week seizures last for hours if she isn't rushed to hospital to be given phenobarbital to be put to sleep , which because of her condition she's puffy so they cant put I.V. in her easy, so they have to drill holes in her bones to run special I.V. and most of them they fail so they end up drilling her several times.  She has had feeding tube from day one. She has known nothing but pain from time she was born. Recently she was giving only few months to live , insurance doesn't pay for everything and we fight tooth and nail with them for barely enough to make her comfortable. This is the minimum we need so we are trying to pay for (HFC) machine and oxygen concentrater to help her breath (insurance will not pay ), even after buy the one machine I have to pay huge monthly for the other, just trying to ease her passing on her way to heaven! Her name is Ariel Marie Fatula (Our Angel)