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Eddison Explores - Cycling in the Sun!

Updated: Jun 8, 2023

Eddison brings us all the newest edition of his blog Eddison explores - In this edition Eddison tells us about his love of cycling as part of our Sports and Hobbies month!

However, in order to go cycling, Eddison needs certain things to help him manage his ultra rare condition of Xeroderma Pigmentosum.

Being active is something I am passionate about and for me, my real love is mountain biking.

I feel the most happy and free when I am on my bike—it’s like a missing part of me and makes my life feel complete when I am out on the trails feeling the rush of whizzing along the tracks.

I am so lucky that my family share my love and support me in doing this as much as we can. I am really inspired by watching the Redbull mountain biking competitions and it would be a dream for me to one day make the team! These cyclists are so inspirational to me because they really push their bodies to do amazing things.

Taking part in cycling can have its obvious challenges for me.

I manage to make this happen because I put my sunscreen on and adapt my UV protective clothing to be suitable. This means my gloves, clothing (which needs to be UV safe, cool and not rip if I fall off) and most importantly, my amazing full-face helmet which has been one of the best things in my life because without it I would not be able to cycle.

My mum and I have worked together over the years to make various version of a safety visor which works with a cycle helmet. My current version is my favourite!

It doesn’t matter what the sport is or how you choose to stay active, what matters is that you do it. I push my limits to achieve what I can every day because you only get one chance at life—and I want to enjoy and make the most of every second of it.

You can too.

Stay Active, Eddison Out!

Written by Eddison Miller


To find out more about Xeroderma Pigmentosum please visit

To share your story with the #RAREYouthRevolution please email our youth coordinator James Brooks at


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