Hope is in the heart of us.

It’s leading up to our second year of supporting Awareness Month as Army of Us and we’ve decided to do things a little a differently. For many families who live with Rett syndrome, Awareness Month is an exhausting month-long reminder. A constant barrage of facts and statistics roll up your wall, as we all share […]

I am more than Rett syndrome but Rett syndrome is more than me

Why Rett syndrome is not rare Let me explain my thinking. Technically, because Rett syndrome affects fewer than 1 in 2000 it is listed as a rare disease. I’ve been making collages of people affected by Rett syndrome and although I have a load of girls (and boys) in these collages, it’s not even a […]

Hello. I’ve got something to say

The eye gaze device has given girls with Rett syndrome a voice that they can control. They get to intentionally choose what they want to say; it’s not interpreted by a parent or a carer. Some girls with Rett syndrome have always been able to communicate, but it’s rare. Rett syndrome blocks so many communication […]

A worn path

Why walking and standing therapy is important. Humans are designed to stand, walk and run; it is a primary function of our physiology and why we are built the way we are. Our ability to stand upright differentiates us from so many other animals; it also means it’s vital for our natural state of growth. […]

Believe in me, like I believe in you.

Rett syndrome education and how it’s helping us all. We all believe in the potential of our children; we all hope that our child will achieve something meaningful in their lifetime. We also have different ways to measure success, and sometimes it’s incredibly hard not to pressure your drive for your child’s success onto their […]

I love someone who is rare

A rare disease is defined when it affects fewer than 1 in 2000 people – statistically speaking that means that around 3.5 million people could be afflicted by the same disease and it would be considered rare. That is an awful lot of people. Based on the extrapolation of statistics we have on Rett syndrome, as […]

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 […]

What is Rett syndrome?

Rett syndrome is a disorder that mostly impacts girls. It affects many parts of the body, but because it influences development of the brain it is primarily seen as a brain disorder. It is currently estimated that around 1 in 10 000 girls have Rett syndrome. Rett syndrome is genetic, but it is not hereditary. It is […]

More about Trofinetide (NNZ 2566)

Trofinetide (NNZ 2566) increases the amount of connections in your brain that control thought and movement, more connections are good. Rett Biology People born with Rett syndrome have fewer synaptic connections. They also have overactive microglia, which are responsible for the maintenance of these “connective structures”. What we hope to change Trofinetide  does 2 things: Helps […]

The chain of trust

It’s difficult in the modern world to give over the care of your most treasured possession, your child, but the reality is that this is very often a requirement of modern life. In the everyday chain, teachers, doctors, baby sitters, they’re all part of their lives and you have to trust in the system that […]