Tilly Hayward, 17, from Peterborough, is determined to travel the world before losing her sight due to Stargardt disease, a rare genetic condition affecting vision.
Peterborough: Tilly Hayward, a 17-year-old, is determined to see the world. She has Stargardt disease, which will eventually take her eyesight.
This rare genetic condition affects one in 10,000 people. It causes fatty material to build up on the macula, impacting central vision. Tilly’s peripheral vision is also declining.
In November, doctors told her she would go blind. With an uncertain timeline, Tilly started a fundraising campaign to fulfill her travel dreams.
Her top destinations are Disneyworld in Florida and the beaches of Dubai. Tilly is studying psychology at home and feels motivated to explore the world.
She has loved beaches and planes since she was a child. Tilly’s parents both carry the gene for Stargardt disease, giving her a one in four chance of developing it.
People noticed her vision issues when she was four. Initially, opticians suggested glasses. By age seven, she was bumping into things and sitting close to the TV.
After her mother took her back to the optician, they were referred to Peterborough Hospital. Eventually, they went to Moorfields Eye Hospital in London.
At nine, Tilly was diagnosed with Stargardt disease. She explained that her central vision is gone, and her peripheral vision is unclear.
In November 2024, scans showed her peripheral vision was also affected. Despite this, Tilly is learning braille and studying for her A-Levels online.
She used to be embarrassed about being registered blind but has since connected with others facing similar challenges. Tilly’s mother has been her biggest supporter.
Last year, they traveled to Spain, which was both amazing and difficult for her. Tilly is making the most of her experiences, focusing on what she can still enjoy.
She has faced depression and a battle with anorexia due to her sight loss. However, she has learned to express her feelings and adapt to her situation.
Tilly launched a GoFundMe to help her travel and has raised £1,490 of her £2,000 goal. Her dream is to visit Florida and experience Disney.
Even if she can’t see the castle, hearing the music would be incredible. She also wants to visit Dubai for its unique blend of beach and city.
Tilly encourages others facing sight loss to adapt and find hope. She believes that her experiences have shaped her into a stronger person.
You can support Tilly’s fundraiser here: https://www.gofundme.com/f/v2x5gd-tillys-travels.
