Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Friday, July 29, 2011

A small step for some, but a BIG step for us

So, Wes and I have been in the Rett Syndrome business for three years now.  In that time, we have talked about Abby and her battle with RS a lot, but usually it is with people who work with Abby or our family and friends.  We haven't done any news articles or talked about the strollathon on our local news.  Ive thought about it, but haven't been quite comfortable enough to do it yet.  This week, though, we took a step out of our comfort zone to raise awareness, and hopefully funds, for Rett Syndrome.

Wes's employer participates in a giving campaign that encourages it's employees to make charitable contributions taken out of their paycheck to the United Way.  During the past year, he has worked to enable employees to make their donation to IRSF, through their United Way donations.  Last week, they held a meeting which, in part, discussed their contributions.  It was the perfect opportunity to educate the other members of his department about RS, and what an impact their contribution could make.  He invited Jenni Grammer from IRSF to talk about the foundation and what their mission is.  She showed a terrific video, talked about what RS and what a difference they could make by making a financial contribution.  Jenni is a great speaker and advocate for our girls.  It was awesome seeing her again! I introduced everyone to Abby and talked a little about her and her journey with RS.  I kept her introduction pretty short because the last thing I wanted to do was get teary eyed.  It worked well.  I asked if anyone had any questions....and they did, which was great.  They asked lots of questions that gave us the opportunity to share all kinds of aspects of Abby's life that I wouldn't have thought to mention.  I'm so proud of Wes for getting the whole process started.  He was a little anxious about sharing this part of our family with everyone that he works with, but he is now glad that he did.  They were extremely supportive.
Abby getting a hug from Jenni before she heads back to Cincinnati

It was a small step, but I talked about Abby and Rett Syndrome to a group of people, some who I don't even know, without getting too flustered or crying at all.  I can think of things that I wish I had said, but I guess that will always be the case.  After all, Abby's journey is not one that can be summed up easily in an hour.  The response was very positive, which gives my confidence to do it again.          


  1. That is so wonderful!! Great job for stepping out of your comfort zone, its so difficult but so worth it. And this picture of Abby with her adorable cheeks! I swear each pic she gets cuter and cuter.

  2. That is GREAT news!! Pic of Abby and Jenni is adorable!!

  3. hooray! hoping we can do something like that for the next two years with dartmouth. and you've given me courage! and three cheers for not crying. i can't say the same as i've been introducing leah to new people this week. lots of tears, which is super awkward for ME in front of strangers. maybe one day i'll get there.