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 […]

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 […]

Real life Rett

#realliferett was born in a moment of deep frustration, a ‘screw you all, this is what I have to deal with’ kind of moment in the midst of yet another hurdle in the life that is Rett Syndrome. I was lying next to Lily in her ‘sick bed’ that we set up in our bedroom […]

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. […]

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 […]

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 […]

Hands to play – Reach out for Rett syndrome

There are very few symptoms practically every person with Rett shares, but repetitive hand movements is one of them (also referred to as stereotypic movements). These hand movements were one of the first things that Andreas Rett noticed when he classified Rett syndrome. They are identified as a classic symptom of Rett syndrome, but also […]

Story of my life

I’ve been writing blogs for some time now, but this is possibly the hardest one I’ve had to write. I want to give you a small glimpse into what it is like to live with Rett syndrome. Rett syndrome is a complex genetic disorder that affects the connections in a person’s brain, robbing them of […]

Say Yes

It’s strangely coincidental that a discussion with Kelly a couple of weeks ago has led us both to blog about same event, but from a different perspective. Kelly was telling me how she hated feeling helpless and having all her wonderful family and friends coming around to help her for the simplest things was so […]

I’ve got you to hold my hand

This blog was inspired by some photos that Crystal shared with me, of her daughter holding hands with the people that truly matter in her life. The thing about the journey with Rett syndrome is, is it not something you should ever have to do alone. The family is there to support your child and […]