7th Annual World Rett Syndrome Congress

I had such an amazing time out in New Orleans last weekend. I was out there for the 7th Annual World Rett Syndrome Conference. Or in my words – a family reunion :) These are moms, dads, therapists, and friends of girls with Rett Syndrome. People that have entered my life and in a way, saved it. They are my “go to” people when I am struggling with everything that Rett Syndrome throws at us. They encourage me, challenge me, and most of all remind me that I am not in “this” alone!
I sat in on some great sessions – I learned some new things and was reminded of things I had learned over the past five years but had not thought about in awhile.
I got to meet some of my HEROS, like beautiful Nora.
I also got to meet parents (like Kristy and Justin) who have been my source of inspiration and lots of smiles over the years.
Of course, it is always amazing to spend time with some of the GP2C crew!!
There was a message board that was going up for the researchers – who were coming in town to meet, go over all of the latest findings, etc – and some of us wanted to share the faces of our angels with them – to remind them of the amazing girls that their work will be benefiting.
Do you have any idea what it is like to sit in a room FILLED with people who “get” our girls? Listening to educators explaining to us how SMART our girls are, how they CAN learn and WANT to learn and SHOULD be with their typical peers. Which of course are all statements that I completely believe in. I met an amazing young girl that is going into the sixth grade and is COMPLETELY included in her mainstream classes. And she is ROCKIN’ them!! I cried through the entire session. Seeing the close friendships that she has with her circle of friends – hearing THEIR words about how Ellie has changed THEIR lives (just as much as they have changed hers!) Listening to her one-on-one aide talk about how she pushes Ellie because she believes in her so much – and you know what – Ellie pushes right back – keeping up with the toughest of math! Hearing from a principal who did not want Ellie in their school – he did not believe that Ellie was “in there” and hearing the words of that same man 3 years later saying he HOPES they get another little girl with Rett Syndrome in their school because this time he would “do things right.” *sigh*
It was a huge reminder that our girls just want what every other girl their age wants and we need to do our best to make that happen!
I also got to see “old” friends – not old in age but old in that we have been “sisters” since the beginning of this Rett Syndrome journey :) <love you Carrie!>
of course I had some time for super sweet cuddles from Avery too :)
We of course had time for some fun too – Rett parents need fun too – and fashion, we get out of our sweat pants and put on some make up and look good – dang good…..Tanis is a perfect example of this – I love Tanis by the way, I met her for the first time over the weekend – she is a fellow GP2C mommy! I love her dress ALMOST as much as I love her :)
And of course one of the highlights of the weekend was meeting Andrew and his amazing mom Brandi….Andrew is sort of a ROCK STAR in the Rett community – as you know Rett is usually most common in girls – but Andrew is an exception. An amazing, brilliant, loving exception and it was an honor to meet him! I have been following his mommy’s blog for years!










Of course coming home was pretty good too…..these faces of the little loves of my life was just what I needed after a long, emotional, awesome weekend!


4 Responses

  1. Tanis June 30, 2012 at 10:17 am | | Reply


  2. Tracey June 30, 2012 at 5:36 pm | | Reply

    Sounds and looks like an awesome time :) I hope to make it to the next one!

  3. Janie Beaumont July 1, 2012 at 1:16 am | | Reply

    Great kelly…… please could you advise which workshop it was that Ellie was in, i am so sorry i missed that one, it sounds so inspiring, i wonder if irsf video’d it?, they said we will be able to buy some audio files online?

    Does Brooklyn go to mainstream school?

    Janie xx

  4. Andrew October 20, 2015 at 4:07 pm |

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