My marathon effort for my daughter’s sight

31 January 19

written by:

Mark Roberts

(more articles)

Mark Roberts with his daughter Rose
Mark Roberts with his daughter Rose

This month you will find me training intensively for the London Marathon, which takes place on 28 April 2019. The reason I’m running is to raise money for eye research charity Fight for Sight.

The reason I’m supporting Fight for Sight is because of my daughter Rose.

Rose was a typical fun loving seven year old. When she mentioned she couldn't see the whiteboard at school at first no alarm bells rang. It was only when I was helping out at school that I noticed Rose was holding her book closer to her eyes than her peers. That’s when I took her for a routine eye appointment.

To my horror, at that appointment Rose wasn’t able to read any of the letters on the eye chart. She was asked to come back another day for further tests and after six weeks she had a diagnosis of Stargardt disease.

I hadn’t heard of the condition before but I soon found out that Stargardt disease is the most common inherited condition causing degeneration of the macula, the central portion of the retina. The condition causes progressive vision loss caused by the death of photoreceptor cells in the macula. There is currently no treatment.

Since that day Rose has had progressive vision loss. She now has difficultly recognising faces at a distance. Her school work has to be adapted and sadly she will never be able to drive. While some things are a little tricky for Rose, essentially she is a fun loving young lady of 14 years, still managing to do the things that all her friends and peers can do. Rose still participates in all activities, skiing & dancing (her love). This is down to Rose’s determination and the love and support she is surrounded with which extends far beyond her family.

At present there is no cure, and as she gets older, I know many things will become tricky when she is on her own. I’m still holding out hope, along with my family, that one day there will be a cure.

That’s where Fight for Sight comes in and why I’m running the London Marathon to raise vital funds for eye research. Fight for Sight is the UK’s leading eye research charity focused on funding pioneering research that could find a treatment for Rose’s condition. The charity is already funding research into several inherited retinal conditions including Stargarts, for example, to better understand the underlying genetic changes in inherited conditions as well as how stem cells could be used to replace damaged photoreceptors. There has already been much progress, but there is more to be done.

If you want to help find new treatments for people like my amazing daughter Rose then please donate to Fight for Sight, or why not try a New Year’s challenge yourself. This year there are Fight for Sight places available on half marathons or mountain walks – you could even sign up yourself for the London Marathon in 2020! I personally know that it’s a challenge worth fighting for.

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