New Young Persons Project from Retina UK

We are proud to launch our new Young Persons Project, which will play a significant role in providing impactful and timely support for young people with inherited sight loss and mental health challenges, across the UK.

People aged 18 to 30 years can fall through the gaps in support provision and face many challenges relating to their work and social lives. The 2021 Sight Loss Survey by Retina UK found that 69.57% of the 0-25 age group haven’t accessed counselling and of those, 25% were “not aware of this service”.

This new initiative for Retina UK, Information and Support is a direct response to the insight we have gained from our young people and their families in the community over recent years.

Families like Finlay’s.

Finlay was diagnosed with retinitis pigmentosa (RP) at the age of ten at Moorfield’s Eye Hospital in 2013. Genetic testing confirmed that both his mother and father carry the recessive gene but in Finlay, it was found to be dominant. Finlay first presented with night blindness and his father fondly remembers doing “Trick or Trip” with him at Halloween because he would constantly trip up.

He was a very sporty young man and his first love was rugby. He played for his school as scrum half and fly half. He also played football (as a goalkeeper) and cricket and enjoyed skiing, basketball, climbing, surfing and the gym. Sport was a really big part of his life.

Finlay was also academically gifted. “He loved to learn and he was a bright inquiring mind.” He was studying biochemistry at Bristol University and was really interested in genetics. He was considering his future career pathway and the possibility of a PhD.

For some young people living with RP, the way in which their condition will shape their future can weigh heavily. Finlay’s family go on to say: “We believe this is what happened to Finlay aged 20 and coming to the end of his second year at university: As he looked forward in his life, all he could see was the negative impact of his condition. He just ran out of hope for what his future with RP could be and this is why, we believe, Finlay took his own life.”

Although sight loss would have had a profound impact on Finlay, he would have been able to achieve so much in his life and he would have been a wonderful person to have around. We only wish we could tell him that now.”

We will continue to gather insight from our young community, and more widely to understand how we can further develop the project and make the biggest difference. Including speaking to members of our Men’s Peer Support Group and our younger staff members who live with inherited sight loss.

Finlay’s family and his girlfriend, Imi would like something positive to come out of the tragedy of Finlay’s death. “Ultimately, we would never want another young RP sufferer to feel like Finlay did, to lose all hope and to feel that taking their own life was the only option left them.”

From so much heartbreak comes so much positivity, at Retina UK we struggle to find the words to thank Finlay’s family and friends for raising over £60,000 to support the project.

If you would like to support the amazing fundraising of #TeamFinlay over 100 of Finlay’s friends and family are running the Bristol Half Marathon and 10k on 19 May 2024 in memory of this remarkable young man. Find out more about their fundraising on JustGiving.