Girl desperate to see the world before she goes blind

Tilly Hayward, 17, has been diagnosed with a rare genetic eye disease and eventually will go blind, news agency SWNS reported.

Stargardt disease is an inherited genetic condition. Affecting one in 10,000 people, it occurs when fatty material builds up on the macula, the part of the retina needed for central vision.

"The news has put into perspective that life is short," she said.

Hayward said she doesn't know how much time she has before she loses her vision, and she has launched a fundraiser to help her see the world.

She always wanted to be a flight attendant, she said.

Hayward was born with Stargardt disease, and both her parents carry the gene, SWNS reported.

The teenager said that people noticed there was an issue with her sight from age 4, but opticians recommended glasses.

She said she still remembers being told by a teaching assistant in math class to "plot coordinates on a graph. [But] I didn't know the piece of paper in front of me had lines on it."

They were eventually referred to two different hospitals.

Hayward said she endured many tests "for the doctors to understand what was going on. I was diagnosed with Stargardt disease when I was 9. I have no central vision and my peripheral vision is like a spiderweb."

She said she has "some vision" but that it's not "clear or normal."

Stargardt disease typically affects only the central vision, but scans taken in November 2024 showed it had spread into her peripheral vision, too, Hayward said.

She has learned to read Braille, SWNS reported, is studying for exams and has accepted that she will lose her sight.

Hayward said, "Until I was 15, I would never admit I was registered [as a] blind [person]. 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."

Hayward said she's now "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."

But today, "I've realized I don't need to control or hide how I feel."

She's launched a GoFundMe page to help her travel the world, and as of early this week, she's already raised £1,490 (nearly $1,850 in U.S. dollars) of her target of £2k (nearly $2,500).

She added, "My biggest dream since I was a little girl is to go to Florida" and that she's "a huge Disney fan" who has always wanted to see Cinderella Castle.

"I've accepted that won't be the case, but even just hearing the music would be incredible."

Hayward said that if anyone receives a diagnosis or is experiencing 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 realize a disability shouldn't disable you," she said.

She continued, "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."

A supporter of hers wrote on Facebook, "God bless you, don't give up hope."  

The National Eye Institute noted that with Stargardt disease, "[V]ision loss usually starts in childhood - but some people with Stargardt disease don't start to lose their vision until they're adults."

There is no treatment for the rare genetic disease, according to the same source, "but vision rehabilitation can help people make the most of their remaining vision."