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Re: [Families of Angelman Syndrome] What I posted for family and friends on my baby website

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  • SARAH BURLEAU
    thank you kindly:) sara good wrote: Hello. My name is Donna and my son Joshua is 3. He was diagnosed with Angelman Syndrome
    Message 1 of 6 , Jan 8, 2007
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      thank you kindly:)

      sara good <iamdonna42701@...> wrote: Hello. My name is Donna and my son Joshua is 3. He was diagnosed with Angelman Syndrome a month before his 2nd Birthday.

      It is hard to swallow. It is your heart being handed to you on a platter. I know how you feel and I am sorry.

      It was finally good to have a diagnosis so we could have a prognosis, but, at the same time all of our hopes and dreams for our child died.

      But, over time, after it has all sunk in, you make new plans and dreams. And the littlest things they do just mean so much.

      I am not saying the road is easy. There are days of heartbreak, nights when you cry yourself to sleep. And days when you feel like they were cheated out of so much.

      But, know that only the Lord doesn't give you anymore you can handle.

      If there is anything I can do please let me know.

      Lots of love,
      Donna

      madisongraceburleau <sarahburleau@...> wrote: January 3rd, 2007

      Well today we were fed our hearts on a plate. Madie's test results
      came back postive for Angelman's Syndrome. And as much as I do not
      want to draw attention to ourselves at this time, I want to educate
      those who love and support Madison in everything she does. Our
      dreams for our daughter to get married, graduate from University,
      call out our names etc. died today. Dr. Keene was gracious enough to
      not call with the test results before Christmas- as he had the
      results since December 13th. We are just trying to digest what we
      have heard and organize our lives the best we can. I will be going
      part time in August so that I can teach, support and be with Madie
      as she really starts to thrive. Madison will still be able to learn
      up into early adulthood. Today we are dreaming a new dream for our
      little girl. One day at a time. Our goals include her saying mom and
      dad, and learning how to communicate in a non verbal manner. As well
      as starting to walk. We know she is a happy little girl and somehow
      seeing her smile makes all this a lot less painful. We have so much
      hope for her!:) She is biting my big toe under the computer desk as
      I write this.

      We love you Madison you are one special girl. Not sure why were
      given this challenge- but our life sure will be interesting to say
      the least:)





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      When you can't have what you want, it's time to start wanting what you have. ~Kathleen A. Sutton

      Sarah Amanda Burleau





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