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Fighting for sight

Teenager Tommy Salisbury shares his experience of living with choroideremia, a rare inherited eye condition

18 May 2016 by Emily McCormick

If you haven’t heard of choroideremia, it’s a condition that mainly affects men and it starts with not being able to see very well in the dark and progresses to complete blindness later in life.

The inherited condition has been passed down through my family and it robbed my great grandfather of his sight when he was 48 years old. Knowing that the condition was in the family, my mum decided to be tested and it revealed that she was a carrier.

It starts with not being able to see very well in the dark and progresses to complete blindness later in life. It affects one in 50,000 people worldwide.

The disease is caused by a fault in one of the genes located on the X chromosome – therefore I had a 50/50 chance of inheriting the condition. When my parents learnt that I had the condition, I’m sure that it must have been really tough for them, especially as my mum had seen her grandfather lose his sight.

Following my diagnosis when I was five years old, my mum and my nan set out on a mission to make others aware of choroideremia and, with the help of Fight for Sight, established a fund in my name – the Tommy Salisbury Choroideremia Fund. I didn’t really understand what a huge impact they would make when setting up the fund in 2005, and how this could help thousands of boys and men just like me.

"Following my diagnosis, my mum and my nan set out on a mission to make others aware of choroideremia and, with the help of Fight for Sight, established a fund in my name"

Since then, together with the help of family, friends, colleagues and other families affected by choroideremia, they have raised over £460,000 to help fund eye research into finding a cure for me and everyone who lives with this condition. 

Along the way, we have gained lots of supporters who are keen to help raise money for the fund too, whether this be through coffee mornings, running a marathon or making a donation.

Everyone’s hard work helped to fund Professor Miguel Seabra’s research project at Imperial College London to investigate potential causes of the condition. His work helped to identify the function of the protein that causes my condition. Without his work, Professor Robert MacLaren wouldn’t have been able to carry out the world’s first gene-replacement therapy clinical trial for choroideremia, which showed extremely promising results and surpassed everyone's expectations. Indeed, we have just received the great news that the early improvements in vision have been maintained over three years later. 

Now there is also a second clinical trial in progress.

It’s exciting to know that my family was part of making this all happen and that they set the fund up because of me. They’ve always encouraged me to make the most of my life, and never made me feel different – they have just loved me and I'm grateful for that.

At the moment, my vision is mainly affected at night as I find it difficult to see in the dark, which is known to happen with this condition.

The work of my mum, my nan and the fund at Fight for Sight gives me so much hope that my future will not be any different from what it is today, and I know that my mum won’t give up until a treatment is ready for me.

We are now a step closer to finding a cure for my condition and I have hope that there is a future where I can see and will not lose my sight like my great grandfather.

To support Tommy’s fight for sight and make a donation to the Tommy Salisbury Fund, text TOMM10 £10 to 70070

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