Hi! Just wanted to introduce myself - I have a child with Angelman Syndrome

Venessa - posted on 08/09/2010 ( 1 mom has responded )

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Hello! My name is Venessa and I hvae two children. A little girl, Nicole who is 6 - beautiful, bright and a lot of fun! I also have a little boy who is 20 months. he is my special needs baby! He is so beautiful and full of life. we found out about 6 months ago that Daniel has Angelman Syndrome - for any of you who may not know what this is....it is a neurological, genetic disorder which affects gross and fine motor skills as well as little to no speech. Daniel is deletion positive which means he has the more severe type and seizures usually will occur.

There is so much more, but if anyone is interested, feel free to check out the website. www.angelman.org

I feel like we are still struggling with all of this. Daniel has about 4 therapies a week and I know life is not what we expected it to be. But, it is our "new" normal and something we will have to get used to.

Anyway, I just wanted to introduce myself and start to get acquanted with other moms/dads out there. Some days are harder than others and as with any child - parenting can be quite challenging. I am hoping to connect with some people on here - and thank you!

Venessa

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1 Comment

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Heather - posted on 08/09/2010

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Welcome! I have a 6 yr old with AS! There's a group on here, Angels With Angelman Syndrome. It's a private group, search for it under all communities and you'll find it. Also, check out the Angelman Syndrome page on Facebook, make sure it's the non-profit foundation page- there's a lot of parents on there too. Feel free to message me if you have any questions.