snett
New Member
Posts: 1
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Post by snett on Aug 5, 2004 17:14:56 GMT
My name is Stephen Nett and my sister and brother-in- law recently delivered a beautiful baby boy on July 20th that has been diagnosed with having Lissencephaly. I am seeking information for my sister, as I can only imagine what they both must be dealing with. I would be very interested to learn of any families that are dealing or have dealt with this affliction. We are a close family, I simply feel helpless and want to research the resources that are available to my sister and her family.
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Post by gcollins on Aug 5, 2004 20:06:13 GMT
Welcome snett,
I'm glad to have spoken to you this afternoon. Your family is in our prayers. Additional info you may not have found yet is the Lissencephaly Network. Dr. William B. Dobyns is a leading authority with Lissy research. There is also a membership package with a news letter. The families and kids get together in different U.S. cities every two years, I think. Anyhow, if you talk to your sister tonight, and have more questions or you guys want to talk just give me a call. One thing to keep in mind is each case is unique and there are doctors who may never have heard of it. Only time can tell the specialist, neurologist and genetisis (sp), exactly which syndrome the patient has and predict what may happen in the future. God bless you and give you strength, you are a good brother and a great uncle! GregC
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