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Thread: Neurofibromatosis, MOYAMOYA, ADHD, Aspergers, Spastic deplisisa CP, many more

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    Community Member mom2nfautism's Avatar
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    Default Neurofibromatosis, MOYAMOYA, ADHD, Aspergers, Spastic deplisisa CP, many more

    Hi, my daughter is 16 y old and in dec. of 2010 at age 15 had a major stroke and was diagnosed with MOYAMOYA.. she has since had two brain bypass surgeries. one in april and one in may and we just found out her moyamoya getting alot worse and now affecting the back of the brain atteries as well. my daughter has neurofibromatosis, moyamoya, adhd, aspergers, spastic deplisa cp, restrictive lung diease, high blood pressure, and she is now having seziuesrs due to the strokes and moyamoya..

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    Hello, I also post here sometimes and on the moyamoya.com site. I hope soemone here can be helpful it's a great website with a lot of great supportive parents. My daughter has moyamoya, Down syndrome, Celiac disease, and many orthopedic issues from her strokes.
    Mary Grace

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    Hello.

    Bless your precious daughter. May her life be filled with happy thoughts and love.

    Best wishes to you and your family.

    There are many supportive parents on this forum, so if you have any questions, do ask.

    seeya,

    Paul, Alison and Grant the champ.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS))))))

    To you and your precious daughter, and welcome to CN.

    My heart and prayers go out to you.

    While I have no experience with any of your daughter's diagnoses, I do have a lot of experience with seizures. If you have any concerns, questions, or need to talk about her seizures, please feel free to post here, and we'll do our best to help you.

    I'm sure that you are struggling with all of the challenges confronting your dear daughter, so I send up prayers for your energy, strength, and wisdom.

    You're doing an awesome job, Mom. Keep the faith.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Default NF and Moya Moya

    Quote Originally Posted by mom2nfautism View Post
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    Hi, my daughter is 16 y old and in dec. of 2010 at age 15 had a major stroke and was diagnosed with MOYAMOYA.. she has since had two brain bypass surgeries. one in april and one in may and we just found out her moyamoya getting alot worse and now affecting the back of the brain atteries as well. my daughter has neurofibromatosis, moyamoya, adhd, aspergers, spastic deplisa cp, restrictive lung diease, high blood pressure, and she is now having seziuesrs due to the strokes and moyamoya..
    Hi
    My daughter has NF, Moya Moya, Hypertention due to a renal artery stenosis. She is 15 also. She started having strokes at 2. Feel free to email me if you would like to talke. pmteet@sbcglobal.net

    Michelle

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