Don;t be their voice, amplify it

My Rett journey

I wish that I knew what I know now. When I was younger.

Rett syndrome is a better diagnosis now than it was a decade ago.

I’ve been on this Rett trip for a while now, and my outlook has changed considerably throughout this journey.

Volumes of studies, research and hard work from a fantastic professional and scientific community is making strides in to both treatments and possible cures all the time.

Pushed on and funded by so many excellent Charities.

I’m not going to kid you, it’s still a hard diagnosis but there is genuine hope right now.

A year ago there were just over 18 really great studies in flow that I talked about, today that number has tripled.

When my God daughter Carys was first diagnosed I went onto Dr Google and consumed what I can only call now a mountain of truly bad information.

It was decades old, it was incorrect, it had no basis in real study but it had hung around for so long that no one questioned its authenticity.

In between all this bullshit, I found little seeds of light.

I discovered that therapy was incredibly beneficial.
I discovered that learning never stopped, and regression did not incapacitate.
I discovered that communication was possible.

Mostly importantly I discovered that she was smart.

I also discovered Dr Google had made this diagnosis much, much worse.

I had been building this profile of everything that could possibly go wrong, every symptom, every issue and stacking them up.

Instead of focussing on Carys, I was consumed by Rett syndrome.

For James, Carys’ Dad these feelings were compounded, they obviously would be, Carys is his daughter.

I made a promise that I would fight with him.

We threw ourselves into Rett syndrome, we threw ourselves at Rett syndrome.

Literally no mountain was big enough to stop us. (There’s a flag at the top of Everest – the proper top, not the bottom-top that everyone else visits – that says “Cure Rett” thanks to our friend Sam – Thank you Sam)

We stormed like headless chickens all over the country, combined we lost the bodyweight of an extra person in fat 😀 Many cakes were murdered in the making of this physique…

We ran, swam, cycled, “obstacled” our way through every hardcore event we possibly could. Joined by our loving friends and family.

We raised a lot of money, generously donated by our loving friends and family.

I met Melody and she showed me something else. She showed me courage and strength and a sassiness I can’t even describe. She showed me what fighting truly was.

An unfortunate reality in Rett syndrome is too many girls (and boys) have been taken by the disorder or because of it.

This is something we can never fix, there is no cure for that pain. All we do is hope that we fix this soon enough that no one else ever has to live with it.

All my love to you families who have lost your child, sibling or friend.

You will always be a part of the fight.

I’ve now created over 10 000 images for Rett syndrome, James has coded enough software to form a facebook sized tech start up.

Between us we have created non stop campaigns for Rett syndrome, that (call me egotistical) have changed the way we communicate about Rett syndrome in Social Media (You had better bring your A-Game next year because it’s ON!).

All that while Carys was at home, being Carys. The smart funny girl that she is. She doesn’t complain, she always has a smile for me. I mean a genuine smile that warms me to the core. Sometimes, if I’m lucky enough, she has a joke for me too.

On this journey we learned that everything we were doing for Carys was great BUT doing things with Carys was better.

Rett syndrome is a horrible diagnosis, but there is hope, SO MUCH HOPE.

If you want to climb a mountain, climb the communication one, and the education one, and the one where you can get her walking therapy. What ever therapy she loves – horse riding, swimming, lights, music. Run the marathon that buys her an eye gaze, or a special bike.

Stimulate her mind, it is a muscle, work it. Believe in her and show her you do.

Those are the obstacles that really matter on this journey.

I’ve never regretted these things that I’ve done, I’ve met the most amazing people on this journey, who’ve run, climbed, punched, chopped, swam, made coffee, and cakes, had extravagent balls, dinner parties, quiz nights, fun days and many other things.

I can’t thank them enough for their support.

Don’t let Rett be your excuse for absence, because that’s when Rett syndrome has truly won.

Invest your energy into your child, keep her healthy, educate her, work on communication strategies, use therapy. Don’t “be her voice” help her access her voice.

I’m going to say something a little controversial here, but after years of being prodded I have a thick skin 😉

I have noticed is how many of the people who communicate have great teachers as parents.

I think great teachers share a universal truth, they don’t take shit.

You shouldn’t either.

She is a child, she will get sulky and moany but she needs to be parented just like all your other kids. Don’t be a push over.

Television is a reward not a babysitter.

A big mistake I made in the beginning was thinking I spoke for her, I didn’t, I don’t, I’ve learned. She has the ability to speak for herself, help her access that ability.

This is something you can do right now.

I’ve been fortunate enough to speak to people living with Rett syndrome, and they all universally agree – they have their own voice, don’t be it.


We really, really, really need to start listening to what they say.

Look for the good news.

Surround yourself with champions who will support you and her.

Teach her siblings to help and teach her.

The sibling bond is incredible in this Rett network, at the same time don’t forget they are people too and they also want attention, alone time and opportunity.

Rett is a better diagnosis now than it was a decade ago, look for the fuel which will help you and her be happy.

Sorry for the long read I got carried away.

I blame Mimi Burke for this post because she sent me down the research rabbit hole over a week ago and I’m only just lifting my very hopeful head

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