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193Re: [Parenting Children with Moyamoya] (unknown)

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  • LONNIE NORMAN
    Aug 1 7:05 PM
    • 0 Attachment
      I have never heard of williams diease but just knowing someone else out there can relate to our situation makes me feel better. I am sorry to hear she is not doing well. I also am glad to hear that life span doesnot count. We are checking into other Drs just to see what they say about the diease. thank you for the input and you are right it is in GODS hands
      Sandy








      mandy harmon <HarmonMandy@...> wrote:
      My daughter has williams and moya moya syndrome. When she was first
      diagnoised with moya moya we were told she would live to 9-10 years and
      surgery was not possible only blood thinner. We found another Dr and
      (Scott) She had 2 surgeries and is now 10 1/2. She is having alot of
      trouble but it is possible it is from some of her other problems. Several
      Drs mention a short life span with her combination of issues but others
      disagree. I say it is best left to God!! I quit guesing ehr life span- it
      doesnt add any time.

      I hope your daughter does well. If I can help- I would love to. mandy

      >From: LONNIE NORMAN <lnorman88@...>
      >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
      >To: parentingchildrenwithmoyamoya@yahoogroups.com
      >Subject: [Parenting Children with Moyamoya] (unknown)
      >Date: Wed, 23 Jul 2003 17:57:02 -0700 (PDT)
      >
      >Hello,
      > I have a six year old daughter who was diagnosed with moya moya when
      >she was 11months old they did the EDA surgery on her and she had a massive
      >stroke. which she slowly recovered from then when she was 3 years old they
      >did the other side of the brain. She had another massive stroke and the
      >doctors say she would never speak again however they were wrong she can
      >talk but not like a normal 6 year old. Now there is nothing the doctors
      >say they can do. We are wanting to know if someone has more information on
      >this disease and can give us some light into the subject.. Thursday our
      >neurologist told us the lifespan for a small child is usually only up to
      >10years. Does anyone know different. Is there any hope out there for our
      >Samantha?
      >
      >
      >---------------------------------
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      >

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