Grace for Rett » Grace's Life with Rett Syndrome

Our first meeting with other RS families

The sun was shining down us on, warm and bright as we watched all of the other families with wheel chairs cross the lawn at our favourite park. “There’s one. There’s one!” Steven and I whispered to eachother, meaning that by the looks of the chair, it must be the first guest we were waiting so desperately to meet.

Amy was stunning in her little chair. Hands in her mouth just like Grace, playing with her tongue. My heart immediately felt warm at the sight of this perfect little girl and I instantly knew that we are not alone.

We met 6 other families with daughters who had RS ranging in ages from 1.5 (Grace) to 15 years old. Some could walk, some could use their hands, some were drinking from bottles just like Grace. It was so wonderful to see someone else feeding from a bottle, taking turns feeding and holding her hands down to keep them out of her mouth while she eats. Was like looking in a mirror.

There really isn’t enough I can say about how stunning every single one of these girls was. You’ll see it in their eyes. I’ve posted the photos here and don’t feel like uploading them again so please follow the link. 🙂

Catriona - June 14, 2010 - 10:43 am

Fabulous photos, Elizabeth – it was such a great day, and we felt just the same as you about meeting other families and their beautiful girls. Grace and Amy are very similar in lots of ways; it was really good to be with people who understand the highs and lows.

Michael - June 17, 2010 - 2:32 am

Beautiful photos Elizabeth. Wish I could have been there for the big day. What a great connection you have with these beautiful girls.

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