Rett syndrome Awareness Month 

Hi Im Carys

Why it’s important. The only way we will truly disrupt socially, is when we all share the exact same thing. This is a hefty read, here’s a summary. I will talk about : Inclusion, it’s more than just people living with Rett How going viral made a charity $50 Million New Diagnoses Bad information Good […]

My Rett journey

Don;t be their voice, amplify it

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 […]

Still water

 Your child is not “retarded”. This is very close to my heart, every day I read comments from families about the intelligence (or lack thereof) of people living with Rett syndrome. I feel I need to rectify what is being said. I know it’s not their fault, families (and friends) get their information from people […]

Rett syndrome nutrition & the big second brain (your tummy)

Good nutrition is the building block of a healthy brain. New research is telling us really important stuff about the gut and Rett syndrome nutrition. How it is now seen as our second brain and also as a window to our brain health. Our guts are incredible things; they’re also one of the most important cogs […]

The Trofinetide trial is important to Rett syndrome.

We now know what Rett is, what causes it, where it’s located. We have proven it’s reversible and for the very first time, we potentially have a treatment that could profoundly impact the disorder. Crucially, improvements were shown after less than 2 months. Because of the way Trofinitide works, we could expect to see continued […]

Boys with Rett syndrome

Boys with Rett syndrome have 1 of 2 other disorders which allow for a Rett syndrome diagnosis Klinefelter syndrome (Also known as 47 or XXY) Somatic mosaicism This is because Rett syndrome is a clinical diagnosis and a clinical diagnosis for boys can only be given if 1 of these conditions is met. A clinical […]

Regression

I just wanted to have a quick convo here because in the last few days I’ve had 2 Moms who’ve been told that their child is regressing again. We have no way to scientifically measure regression, or even say someone is definitely in regression. It is an observational diagnosis. Which means it can be wrong. […]

No ordinary girl

I’ve started this post so many times, but I always come back to the same thing. You can only be described as exceptional when you spend every second of every day proving every one wrong. That is what these wonder women have been doing for at least 21 years (in one case 58 years). I […]

Keep looking forward.

In October we called our awareness campaign the HOPE campaign, because we wanted to talk about the things that we are hopeful about. We wanted to talk about how all those little things are slowly coming together, helping us progress, and how every day we are beating Rett syndrome a little bit at a time. […]

More about the #REALLIFERETT Campaign

Trish and I discussed the #realliferett campaign for some time, even after she had finished the blog post she was worried that it might be too raw, too emotional. What she has done is incredibly honest and brave. I think most parents dealing with Rett syndrome are brave, but society doesn’t like them to be […]