What is Stargardts Disease?

Stargardt Disease is an inherited eye condition that affects the macula – the part of the retina at the back of the eye responsible for central vision and detail.

If you’ve heard of Age-Related Macular Degeneration, Stargardt’s is similar, but it occurs in children and young adults. You can read more about the condition here.

Our Story

In July 2011, our daughter Rose was just 7 years old when she mentioned she couldn’t see the whiteboard at school. At first, we weren’t alarmed – she was a happy, fun-loving child doing everything a 7-year-old should.

But when helping at school one day, I noticed Rose was holding her book much closer than her classmates. We booked what we thought would be a routine eye appointment. That appointment changed everything. Rose couldn’t read a single letter on the eye chart. After weeks of further tests at Great Ormond Street Hospital and Moorfields Eye Hospital, we were given the diagnosis: Stargardt Disease.

Since then, Rose’s sight has deteriorated. She has lost her central vision, and at present there is no cure. As she grows older, everyday tasks most of us take for granted will become increasingly challenging – from finding her way in a busy town centre, to reading a train timetable, or simply spotting an exit sign. Rose will never be able to drive.

School was difficult too – all her work had to be adapted, enlarged to at least font size 20, bold and clear. Writing was tricky, reading the whiteboard was impossible. Yet through determination and resilience, Rose pressed on. Have a listen to Tina and Rose talking about the journey on the Fight for Sight podcast here.

And we still hold onto hope. One day, there may be a cure.

Our Fight for Sight Journey

We began fundraising for Fight for Sight in December 2011. Since then, our family, friends and local community have rallied behind us to help create a future that everyone can see.

Together, we’ve raised over £125,000, through incredible events and support, including:

- Brighton Marathon 2013 (Mark) – £25,000+

- Carrots Night Walk 2014 – £8,200

- Local BP Garage Collection Tins – £4,478.70

- Meetingsclub Charity Ball 2017 – £6,500

- Terri Jayne Theatre Arts – £10,499

- China House Girls – £5,200

Plus: Afternoon Teas, Half Marathons, Cake Sales, Halloween Displays, Mud Runs, Jumble Sales, Race Nights, Car Washes, Discos, Bag Packing, Quiz Nights, 2.6 Challenge, London Marathon, Golf Days, Electric Runs… and more!

Now For The Good News

This is not a sad story. Rose is now 21, a fun-loving young woman who embraces life to the fullest. She recently graduated from college with a degree in Professional Musical Theatre and Dance, proving that determination, passion, and support can overcome even the toughest obstacles.

Every breakthrough in research brings new hope. Fight for Sight are funding the brilliant minds and bright ideas that are putting change in sight. Thanks to all our hard work and the generosity of our supporters, a project was funded that if successful, could help pave the way to the development of novel gene therapies for Stargardt disease, as well as several other inherited retinal conditions for which there is currently no cure. These cutting-edge treatments could help slow down or stop progressive sight loss, dramatically improving a patient’s quality of life. Read more about it here.

We hope our story helps you understand why we are so committed to supporting Fight for Sight, the UK’s leading charity funding research into eye disease. Their vision – a future that everyone can see – is our vision too.

Thank you for supporting us and helping turn hope into reality.