On a mission to rethink Rett syndrome

We need to change, we need to change what people believe about Rett syndrome. 

When Carys was diagnosed I went onto the internet and started to read, I now think that wasn’t a good idea. Those initial weeks of reading created a host of boundaries in my head of all the things I read she would never do.

  • Can’t walk
  • Can’t talk
  • Can’t use hands
  • Can’t breathe properly

It was a list of boundaries, boundaries I would start to apply to my God Daughter. At a subconscious level I stopped believing in her ability.

Carys, and other girls, have since corrected me, I learned very quickly that communication is a two way thing, and if I wasn’t going to listen, she wasn’t going to engage.

Now I do listen and she does engage, I’m not the best at understanding what Carys’ needs are, her Mum is, but that’s not Carys’ fault, it’s mine because I need to learn her language. There are tools that are changing this barrier in communication, I can’t wait for Carys to tell me to shut up because I talk too much.

I got corrected again this week, by a young lady called Jo. Jo used her eye gaze to make me see that even though many boundaries had been broken, I was still applying them by using words like “won’t write” and “can’t talk”.

I got the message Jo, from a young lady not confined by the boundaries the world of Rett syndrome has applied to her.

I’ll be doing my utmost to make sure I am not someone who applies boundaries to potential. I want to be a part of the change of how we, as a community, perceive Rett syndrome. That doesn’t mean I will stop being a realist, because Rett syndrome is a very real thing. It does mean that I won’t let Rett syndrome define boundaries, I will let her be what she can be.

AvaI saw a picture of Ava this week, one of the girls responsible for changing my initial understanding of Rett syndrome. It was just beautiful, engaging, bright and so full of connection.

I looked at that picture and it pretty much described why this is so important to me, it is the picture I have shared with this blog.

One of the vehicles for our changing attitudes towards Rett syndrome has always been eyes, they’ve been described as having their own vocabulary. So what better way to show why we have to change than using the “windows to the soul”.

Deep in the soul of me
you can find the whole of me
unfettered from complexity
free of my biology
deep within the heart of me
you can hear my voice
straining to be set free

I believe in her, and hopefully, she will believe in me.

Army of Us is on a mission, we want to change what people read about Rett syndrome. We want to accurately reflect the stories of people affected by it, to make sure that people understand that what the read about Rett syndrome right now, is not their destiny. So that when others go onto the Internet, their journey is not decided before they’ve even taken the first step.


So we’ve started to surround ourselves with people on the same mission, we are building up a blogging network to talk about Rett syndrome and talk about the strides medicine, technology and study have been teaching us.

We are looking for people who want to share this mission with us.

Our first new blogger is my friend Jen, who along with her daughter Ava has already accomplished so much on this journey, her blog is inspiring: Angel Ava – Believe



On a mission to rethink Rett syndrome

4 thoughts on “On a mission to rethink Rett syndrome

  1. Angela Truelsen says:

    Although the initial devastation of hearing the diagnoses of Rett Syndrome would still have been quite devastating,I wish this was the first article I could have read.Maybe hope would’ve sparked alot sooner instead of the total grief that enveloped me.
    After two decades of being intimate with Rett Syndrome I’ve learned many many things.Primarily that unconditional love does exist and hope always follows. I’ve learned my daughter is a warrior and our Hero.
    She is stronger than Rett Syndrome and

    1. We are hoping to change that Angela and if we all work together we can. For every new parent, family member, friend out there. We want this to be the first thing they start to read.

  2. I have been writing the above blog about my daughter, Lucy, who has Rett Syndrome for almost four years. I always do my best to write about all she CAN do. I would be interested in joining your blogging network if possible.

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