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  • Eric Butzow
    My name is Sandi and I have a 16month old son who has been diagnosed deletion positive. We are starting a research study this week at Children s Hospital in
    Message 1 of 4 , May 7, 2002
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      My name is Sandi and I have a 16month old son
      who has been diagnosed deletion positive. We are
      starting a research study this week at Children's
      Hospital in Houston Texas. I am curious if any of
      your children are also enrolled in the protocol, and
      if so what has your experience been like? They
      are using folate and betaine to improve brain development
      etc. Also - I would like to hear from any other parents
      with young children with AS.

      Many Thanks,
      Sandi


      [Non-text portions of this message have been removed]
    • Kathy Leonard
      Hi Sandy, My name is Kathy, welcome to the group. Are you also on the other AS list? That is a big one with lots of good advice. There is also a chat available
      Message 2 of 4 , May 7, 2002
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        Hi Sandy,

        My name is Kathy, welcome to the group. Are you also on the other AS list? That is a big one with lots of good advice. There is also a chat available to you on Wednesday nights that has parents with AS on it. It is just a group for Angelman famililes. Some have young children and a few have older children. Let me know if you want to attend and I can send you an invitation. Do you get any respite care, or children's special health care?

        Take care!

        Kathy mom to Mandy 10 Angie 4 Rocky 13 months all AS, ube3a

        http://www.geocities.com/candlecrazy_1999/girlswebpage.html





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      • Kelley Smith
        Hi my name is Kelley and my daughter is 5, with deletion positive. I Would like to know more about the research that is going on. I am intersested in any type
        Message 3 of 4 , May 12, 2002
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          Hi my name is Kelley and my daughter is 5, with deletion positive. I Would like to know more about the research that is going on. I am intersested in any type of research. Please let me know of any others. Thanks Kelley Smith
          Eric Butzow <htbeat@...> wrote: My name is Sandi and I have a 16month old son
          who has been diagnosed deletion positive. We are
          starting a research study this week at Children's
          Hospital in Houston Texas. I am curious if any of
          your children are also enrolled in the protocol, and
          if so what has your experience been like? They
          are using folate and betaine to improve brain development
          etc. Also - I would like to hear from any other parents
          with young children with AS.

          Many Thanks,
          Sandi


          [Non-text portions of this message have been removed]


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        • wsj88
          Hi Kelley, Welcome to the group. My son is almost 10 and deletion positive also. I have not been involved in any of the research as of yet, so I can t really
          Message 4 of 4 , May 13, 2002
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            Hi Kelley,
            Welcome to the group. My son is almost 10 and deletion positive also.
            I have not been involved in any of the research as of yet, so I can't
            really help you out there, but I wanted to wish you the best of luck
            with it and hope that you will keep us updated.

            Angel hugs,
            Wendy
            Matthew,9, del+
            Hobart Indiana
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