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Episode #10 Steph Wood

05/03/2021

This week’s podcast is with Steph Wood who lives with her husband and young daughter Emilia, in Dornoch in the very far North of Scotland.

Emilia is the magic age of four. That beautiful age when a child’s true personality begins to emerge; when they start setting out into the world somewhat independently of their parents, developing preferences for particular other little people and become a tiny friend themselves.

So how is life different when you have a four-year-old with Rett Syndrome? How can you tell who they are without speech? How can you tell who they like or they want? How can you  know what’s the matter with them when they cry?

Through this honest conversation, Steph and I explore all this and more. We talk about the difficult days of searching for a diagnosis and finally finding Rett. We talk about what it’s like having to lift and carry a large child beyond the age that most of us stop lifting babies.

Most importantly, we talk about our shared hope for the future, treatment for our children. Whether that be drugs or therapies to improve their health or their abilities; we’ll both take anything that can give them a better life.


We hope you enjoy the episode! Your comments on the podcast enable us to continue to make more podcasts, so please do leave a comment, whatever platform you listen on. Please share on social media with a comment and tag us in @ReverseRett on Twitter, FB and Instagram.

Links

Brainwave

Rett UK/communication info

Potential funding avenues for eye gaze and other equipment