Hayley Kennedy: taking on the world for Moorfields
7 January 2020
Hayley has Stargardt disease and is a patient at Moorfields. After fundraising for us for a few years, she took it to the next level.
In 2014, Hayley began her fundraising journey with us by running the Brighton marathon. It was the first real exercise she had done since she was diagnosed with Stargardt disease, and it was a big challenge.
What is Stargardt disease?
Stargardt disease develops when an area of light sensitive cells at the back of your eye (the macular) begins to waste away. It is a genetic condition and can cause severe sight loss.
The macular is part of your retina, and it’s responsible for detailed vision - you would need it to watch TV or read, for example.
In Stargardt disease, the cells in the macular begin to die. This leads to a loss of detailed vision and a reduced ability to see colour, as well as blurriness and blind spots.
The macular is only responsible for central vision, so Stargardt disease doesn’t usually cause loss of peripheral vision. However, many people with Stargard disease will end up with severe vision loss.
1 in 9,000
Stargardt disease affects one in every 8,000-10,000 people
Since Stargardt is an inherited genetic condition, symptoms usually begin to show before the age of 20.
Currently there is no treatment or cure for Stargardt disease. People living with Stargardt disease should wear UV-blocking sunglasses to protect their eyes from further damage.
Trials are currently in progress investigating whether stem cells could be used to repair the macular and restore sight to patients with Stargardt disease.
After months of training and dedication the day arrived, and 26 miles of Brighton roads later Hayley crossed the finish line. It was a huge achievement, but soon enough she was looking for something to push her even harder.
A year later, Hayley was ready to train again. “Towards the end of 2015, my friend and I started talking about climbing Mount Kilimanjaro,” she says. “Neither of us had been to Tanzania and it was on the bucket list.”
Hayley trained for Kilimanjaro for a number of months, going on long hikes to get used to walking long distances and walking at altitude.
The route up to the top of Kilimanjaro took eight days of hiking through rain, snow and ice, and through forests, rocky terrain and glaciers. Hayley suffered from exhaustion and altitude sickness, but it didn’t stop her.
She reached the top – an unbelievable altitude of 3,895 metres!
Everest Base Camp
And it wasn’t long before Hayley began planning her next big challenge - this time trekking to Everest Base Camp!
Sitting at a lofty 5,380 metres, it was going to be an even more difficult climb than Kilimanjaro.
Just weeks before the challenge began, Hayley decided to register herself as visually impaired following an eye check-up at Moorfields. She received the phone call confirming her registration on the day she flew out to Nepal - so her first act as an officially visually impaired person was to take on Mount Everest!
It took 12 days of hiking through wind and rain at high altitude to get there, but for Hayley it was all worth it. She remembers getting to Base Camp and watching the sun set over the mountains as a magical experience.
Saying thank you
Hayley is very grateful to have had these opportunities. “I want to thank all of those people who supported me through both of these challenges and though the difficult times of this illness,” she says.
Hayley expressed her gratitude by fundraising for Moorfields Eye Charity - and her efforts have been truly remarkable.
With each of her challenges, she has raised more money for Stargardt research and paediatrics at Moorfields. Her running total is now over £13,000!
These funds will be invested in world-class eye research, education and care at the hospital, making a real difference to the lives of people with sight loss.