I don't know a lot about computers, but maybe there is a site we don't know about. There is a place somewhere in the south that finds doctors for people. PBS did a special on them two(or more) years ago. They may also be able to find sites and computer pages devoted to your son's problems. At least they might be able to know where to look. Could you email PBS, tell them your son's story and ask them to look back in their archives for a story, a special on two men who were dying from Aids. These men searched and searched for doctors with no success. So eventually they started a web page to find doctors for people who could not find doctors themselves for their ailments.
I know it is a long shot, but there can't be that many stories on PBS like that. If you could convince someone to help you, and put you in touch with them, they might be able to find better medical care for Zach plus a better site for him.
Please don't misunderstand me. We love having you as part of our group, and we don't want you to stop coming here EVER. I just don't think we're doing him justice, because we know so little and have not had that much experience except, like in my case with my friend's daughter and my son. His problem as you know was completely different. He did survive his cancer though, and the odds were not in his favor. They removed a malignant brain tumor shaped like a large grapefruit with a lemon on the end. When I got him he was still in the middle of his battle. He couldn't walk a straight line; he walked, but his balance was so bad, he fell over. He also drooled and was bald from the cobalt radiation to his head and chemotherapy. The doctor wouldn't give odds to his survival, but they were warning us that he probably only had a few months, so not to "get our hopes up". Hogwash.
He managed to say two words, "me want". He's always had strong assertive skills, from his father, I'm sure. We had a long ways to go, but today he lives on his. Growing up in an Inn was good for him, he learned socialization skills and picked up how to deal with people even if he did look funny. He recently won the gold medal in the Special Olympics Golf Tournament. We were so proud.
I know this isn't very helpful for you, except perhaps to give you hope. The doctors practically told us he would die, but he didn't. He fought hard. Zack needs to fight his battles too. They are different but just as real. It's hard on you, I know. And I don't know if I've helped you. But somewhere on the computer there must be a site for children like Zach. We can give you love and practical advice. But I know there are probably thousands of children in this country alone who are suffering in silence. They don't anyone to know. My friend's child and my knowledge of her condition only happened because she had been crying and she couldn't keep it in anymore. The first thing she asked was complete secrecy. The little girl didn't want her friends to know and the mother didn't want her friends to know either.An awful situation. They moved away when the child was 13. She had not outgrown it, and everyone was still hiding it, which didn't help really, although I can understand it's not something a child or especially a teenager wants as common knowledge. Kids can be so cruel. The kids here locally were so mean to my son, so Sunny built him a pool and a hot tub and the local kids couldn't come use it unless they were nice and were invited. Worked very well. We had the first hot tub/pool in this area. Anyway, I've rambled on way too long. Please forgive my wordiness. I know I haven't helped, but I'm praying for you and Zach, Love, Sally