Here's a video of me that my dad and some friends from MTV made 10 years ago (sorry for the poor quality, this was back in the days of VHS!). They showed this at a Rett Syndrome fundraiser, where my dad and Julia Roberts were being honored. The song is "Hard Knock Life" by Jay-Z.
As you can tell from the video, it takes a lot of people to help me every day. My mom, dad, teachers, and therapists all made sure that I was happy, healthy, exercised, socialized, and well fed. Now that I'm 21, though, I'm too old for public school, so I need to live in a special residence to receive all these kinds of care. That's why I'm so sad that I was forced to leave The Center for Discovery by the New Jersey Division of Developmental Disabilities. Back at home now, I don't receive all these services that I need, and as much as my parents love me, they can't provide all the necessary therapies that I need to maintain my well-being.
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Hi Nancy and Harvey. Of everything I wrote down during our conversations, I forgot to ask for your phone number! Can you email me your number? Best regards, George Rubsam
ReplyDeleteDear Nancy and Harvey,
ReplyDeleteThis blog is amazing! Everyone should know how special Annie is...if they knew it...her voice would be heard.
We will write to all of the politicians listed on the site...WE ALL HAVE TO SPEAK FOR ANNIE.
We love you,
Ellen and Stephen Tucker
What a small World....
ReplyDeleteI was born and raised in Switerland and at 17, went to the US to care for a Rett child, as a matter of fact, the first girl to be diagnosed in the US.
Actually, I bet you know her, as she and her parents were at that very fundraiser with Julia Roberts that you write of.
Long story short... I ended up staying in the US for 16 years, before moving to a Caribbean island on a whim with my 4 kids. There I am helping pull together a school called Omololu and put together a fundraiser there, to give away a week long stay at a villa and local resorts here in Anguilla.
Yup, as you can probably guess by now, I'm the one that called Harvey to let him know he won his trip to Kamique.
All the best to you and yours and what a special blessing to have a Rett child!
Oh and believe it or not, I recently found out we have a sweet angel like you here in Anguilla as well and Omololu and http://www.arijahchildrensfoundation.org/ have just recently been able to put together the first ever programme for Anguillian kids with handicaps. Amazing!
What a small World!