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Autism and Heller's Research

Witches Message
6 Nov 2010, 09:57 PM

I have been trying to understand some things about Heller's in particular, but would also love to hear from anyone that knows anything about the research being done into this, or Rett's, Williams, childhood disintegrative disorder, or even schizophrenia right now. What I am specifically trying to find is if there is a record anywhere of someone never being diagnosed with one of these syndromes, waking around their whole life not knowing what they were doing and no one else ever knowing it because no one got hurt or harmed seriously ever, and then that person figured out themselves the spectrum disorder key and how it fit into the whole thing and was still alive and could explain the science and medicine behind it all. From the things I've read, I've not found a full recovery anywhere, but I also read that they expect to be able to understand some of these things in ten years or so if they're lucky. I have reason to believe I know someone this has happened to and got into the research on their behalf and found some other people to help me, but we have not been able to find anyone with enough knowledge about what is going on in the research area to figure the rest of this out and what to do now. Any suggestion anyone can make will be most appreciated. Thank you!
henrikwgade Message
12 Jul 2011, 04:26 AM

Dear Witches, If you ask for a miracle cure for Heller's Syndrome, you will be sadly disappointed. My son Lukas was hit in 2005. He lost his active language in 2006 and in 2008 we had to put Lukas in an institution for severely handicapped children. I am with Lukas 3-4 times a week. He understand all what we say to him, but he never answers. His wonderful voice was lost too - Lukas won three singing awards in the special school, before Heller's Syndrome. Now, Lukas do not progress at all. He is happy, jumps and yells and love to eat (he can eat huge meals and still be slender as a feather). To conclude: A person with Heller's Syndrome will certainly NOT be walking in the street. We are forever in the world of the institution. Best regards Henrik Gade