Teenager’s plea to see the world before she goes blind

A teenager diagnosed with a rare genetic eye disease which means she will lose her eyesight is desperate to see the world before she goes blind.

Tilly Hayward, 17, has Stargardt disease – an inherited genetic condition that affects one in 10K people.

Stargardt disease happens when fatty material builds up on the macula – the small part of the retina needed for central vision.

Most people with the condition retain their peripheral vision, so will not lose their sight completely.

But last November, Tilly, from Peterborough, Cambs., was given the devastating news her peripheral vision is deteriorating and she will go blind. 

The student said she does not know how much time she has before she loses her vision and has launched a fundraiser to help her see the world.

Her wish list includes Disneyworld in Florida and the beaches of Dubai.

Tilly, who is studying psychology A-Level at home, said: “Being told to prepare for the worst and go blind has given me the motivation to see as much of the world as I possibly can. 

“From the age of four or five, I’ve been obsessed with beaches and planes – and I always wanted to be an air hostess. 

“The news has put it into perspective that life is short.”

Tilly was born with Stargardt disease as her mum and dad both carry the faulty gene. 

There is a one in four chance of the child developing the condition.

Tilly said people noticed there was an issue with her sight from the age of four but opticians recommended glasses.

She explained: “When I was seven, I began bumping into things and sitting insanely close to the TV but I could still read a normal font-size book.

“I remember being sat in a maths class and my TA asked me to plot co-ordinates on a graph. 

“I didn’t know the piece of paper in front of my had lines on it.”

Tilly’s mum Nicola took her back to the opticians, but the family was told it was ‘behavioral problems’, which Tilly described as ‘bizarre.’

They were eventually referred to Peterborough Hospital urgently by a different opticians and were then seen by Moorfields Eye Hospital in London.

“I went through really intrusive and intimate tests for the doctors to understand what was going on.

“I was diagnosed then with Stargardt disease when I was nine. I have no central vision and my peripheral vision is like a spiderweb. 

“I have some vision but it’s not clear or normal.”

Stargardt disease typically only affects the central vision but scans taken in November 2024 revealed it had spread into Tilly’s peripheral too.

Tilly has learned to read Braille, is studying for her A-Levels online, and said she’s accepted, she will lose her sight.

She said: “Until I was fifteen I would never admit I was registered blind. I was so embarrassed. 

“Now I’ve grown up and connected with other people with similar conditions, I’ve realized you can still achieve amazing things. 

“My mum has been incredible and she’s always been my biggest champion.

“We went to Spain last year and it was just amazing. I felt so happy there but equally it was really difficult. 

“I remember going on holiday a lot when I was younger and I could see so much more.

“I’m making the most of what I can do – if I can’t see the people or waves on the beach, I’ll listen to it.

“I’ve gone through some really horrible depression and through not knowing how to deal with my sight loss, I’ve had a five year battle with anorexia. 

“It became a way to numb my emotions but through other people sharing their story, I’ve realised I don’t need to control or hide how I feel.”

Tilly has launched a GoFundMe to help her travel the world and already raised £1,490 of her £2k target.

She added: “My biggest dream since I was a little girl is to go to Florida. 

“I’m a huge Disney fan and I’d always envisioned walking into the park and seeing the castle in the distance. 

“I’ve accepted that wont be the case anymore – but even just hearing the music would be incredible.”

“I’d also like to go to Dubai. I think it’s such a cool place with the beach and the city all in one. 

“If you’re receiving a diagnosis or going through sight loss, it may feel like the end of the world and there’s no future or no hope.

“It does take time but I’ve grown to realise a disability shouldn’t disable you.

“You can learn to live with it and adapt. If I hadn’t gone through sight loss, I wouldn’t be the person I am now.”