As you know, a few nights ago there was a fundraiser for Rett Syndrome here in New York City.
For this years event I brought along Lily’s team of home therapists as they are the driving force that helps my kid maintain, and gain, basic skills. And they are so deserving of a fun night out.
And we had a fun time! What made it even better was that my brother Matt came to the event (he was up in NYC for work this week). But… But… The word ‘victim’ was used to describe girls with Rett syndrome during a speech. And wow did it rub me the wrong way.
My child is not a victim. She is an amazing individual who overcomes – on a daily basis – obstacles that would be unimaginable to most. I see her as a hero. I see all our Rett sweeties as heroes.
I know that the presenters of this speech were not meaning to offend. I wish they would have spent more time focusing on all the amazing things our girls can do and all the wonderful things they teach us. How they inspire every single person they meet and how they light up the lives of their families and friends. That would have been the perfect thing to hear.
Anyway… Thank you to those who contributed to the event. Every dollar brings us one step closer to a cure. And we are so close!
You are the best Chrissy……You are the best Mom. Lily is the luckiest little girl in the world. Sending a huge hug. Jeannine