Angelman Syndrome

Visit my baby, Joshua’s, blog at: Pooh Bear’s Adventures

What is Angelman Syndrome?

Angelman Syndrome is the result of an abnormality of the 15th chromosome. Individuals with Angelman have global developmental delay and cognitive disabilities. They are usually behaviorally unique with generally happy personalities. Most individuals with Angelman will experience seizures; most achieve control of these seizures with medication. “Angels” rarely develop any speech so the people around them must learn to listen in new ways to what these individuals have to say. Most individuals with Angelman will learn to walk but usually have balance and movement disorders. Individuals with Angelman Syndrome can expect a normal lifespan. With strong supports, individuals with Angelman can live surrounded by friends and loved ones, engaged in meaningful activities, and sharing their unique perspective on life with all those around them.

Angleman Syndrome Listserve

Click on the Angelman Syndrome Listserve link above for instructions on how to join the e-mail listeserver for families or caregivers of children with Angleman Syndrome. This list has been a tremendous blessing to me! The other families on the list are living in your shoes, they know what you go through on a daily basis, they share your hopes and your fears, and they have lots of wisdom from experience! If you are a newly diagnosed family or a family that has not known of the listserve until now, PLEASE join and introduce yourself, I feel certain that you will be welcomed with open arms!

Websites/Blogs by our Angel friends:

Arianna’s Awesome Adventures
Ashley-Ann Our Little Angel
Bub Bub~Jade’s Blog
Emilie’s Blog (Maddie’s mom’s blog)
Life As An Angel
Maggie’s Blog
Maggie’s Family Website

The Angelman Syndrome Forum is also a wealth of information. It’s another place for parents or caregivers of children with AS to go for help and support. What is cool about this forum is that, unlike the listserve, all topics are archived and searchable so someone with a new diagnosis has a lot of information readily available to them! This forum was started by a dad, John Hannaford, in memory of his own sweet girl Alyssa, who had Angelman Syndrome and died at the early age of fourteen. Be sure and read Who is Alyssa Hannaford?. It is a beautiful tribute to Alyssa!

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3 Comments Add your own

  • 1. shilohautumn  |  April 26, 2007 at 10:20 pm

    Sweet little boy! :)
    This is the first I’ve heard of Angelman’s Syndrome. I had to look it up. It actually sounded a little like the symptoms a relative of mine that I helped care for a short time, years ago.

    Reply
  • 2. rebecca turner  |  March 18, 2008 at 2:03 pm

    i believe my daughter, jill, has angelman syndrome. We are going to usf on march 24,2008 to see the geneticist. thank you for sharing your articles and videos with us.

    Reply
  • 3. emiliem  |  April 4, 2008 at 9:47 am

    If you would, add a link to my blog
    http://www.mcdj.wordpress.com

    Reply

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