Hello everyone, my name is Kaiya and I’m going to tell you a little bit about myself. 

When I was born, in September 2014, everything seemed fine. But when I was in nursery, my parents and teachers noticed something was wrong. I was bum shuffling rather than crawling and couldn't pull myself up. I started to walk very late and was unsteady on my feet. My hands and fingers also had a shake when I tried to pick something up or point. It was a problem they didn't really understand at the time. 

Then, when I was about two years old, I went to the hospital for tests. I had an MRI scan and even an operation involving a muscle and skin biopsy, and I stayed in the hospital for two nights. For a while, the doctors didn't know what was wrong, except that my cerebellum was damaged. The cerebellum is at the back of your head and helps send messages from your brain to your legs and arms.

We finally got an answer in August 2018, when I was nearly four. We found out I have a bad gene called NKX6-2, which causes Spastic Ataxia. Genes affect every cell in our bodies and helps make us who we are, they even control the colour of our eyes.

Spastic Ataxia makes it hard for me in a few ways. I can't balance, so I can't walk, stand, run, jump or skip. I also have something called an ‘intention tremor’, which means my hands shake a lot when I try to do something, like hold a lunch tray. 

Even though some things are tough, I get a lot of help. My friends have been great. Teachers at school support me a lot and are brilliant - they help me scribe, change, and do outdoor activities. I also use a walker and a wheelchair, and I do my stretches to help my body. I even have a weighted hand strap to help me with my tremor. 

At school, I like it when my friends help me get things I can't reach, and I love it when we work together. They often come and play with me because I can't run to them, and I really appreciate that. So, I am thankful and hope they keep doing it!

I am very lucky to be going to a school like Edge Grove. Even though I use a walker and a wheelchair, I am fully able to get around school grounds safely without having to go over any steps or bumps. I love Performing Arts and am able to take part in every single drama production. I could not do all this without my amazing teachers who are kind, patient and supportive. They really make Edge Grove a really special school.

And you know what? There’s more! Mummy gives me ice cream when my legs hurt! Everyone around me is very kind and always helps me. I don’t have to go out for games, when it rains so I don’t get drenched like the other children, which is a bonus! Also, when I go to GOSH (Great Ormond Street Hospital), I see lots of children who are much worse off than me, and it helps me remember to be grateful for what I have.

My family have been working hard to find a cure for me and other children experiencing similar problems. The scientists hope to find some gene therapy. I believe it will work and that means in the future I may be able to walk and run. The work is happening in London and America. I am very happy to think that in a few years’ time I might be able to get around easier.