Journey of a Lifetime: A Young Girl’s Quest to Experience the World Before Losing Her Sight

Seventeen-year-old Tilly Hayward from Peterborough, England, is determined to explore the world before losing her eyesight. Diagnosed with Stargardt disease, a rare genetic condition that affects one in 10,000 people, Tilly’s central vision is at risk as fatty materials accumulate on her retina.

Though many with this condition retain their peripheral vision, Tilly learned last November that hers is deteriorating. “The news has put things into perspective for me,” she says. “Life is short, and I want to see as much as I can.” Tilly dreams of visiting Walt Disney World in Florida and the beaches of Dubai.

Born with Stargardt disease, Tilly’s sight issues were first noticed when she was around four. For years, she was told she simply needed glasses. However, by age seven, she began bumping into things and sitting close to the TV. It wasn’t until she was nine that doctors diagnosed her, after multiple tests.

Tilly has learned to read Braille and is currently preparing for her exams while accepting that she will lose her sight. She is grateful for the support from her mother, who has been her biggest advocate throughout this journey.

Despite the challenges, Tilly remains optimistic. “I’ve realized you can still achieve amazing things,” she shares. She recalls a recent trip to Spain, which was both wonderful and difficult as she struggles with her vision.

To fund her travels, Tilly has started a GoFundMe page and has already raised a significant amount toward her goal. She wants to experience the beauty of nature and special moments with her family before her vision fades completely.

“I want to feel the sand beneath my feet one last time,” she expresses. “Even if I can’t see the waves, I want to hear them.” Her story is a powerful reminder of resilience in the face of adversity. Tilly believes that while her situation feels overwhelming, it doesn’t have to define her future. She encourages others facing similar challenges to adapt and find ways to thrive.

The National Eye Institute notes that there’s currently no treatment for Stargardt disease, but rehabilitation can help maximize remaining vision. Tilly’s journey emphasizes the importance of living fully and embracing every opportunity life offers, seeing beyond just the physical challenges she faces.

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