A Tenacious Teenager’s Quest to Experience the World Before Losing Her Sight
A teenager is hoping to travel around as much of the world as she can before she completely loses her eyesight.
Tilly Hayward, 17, has been diagnosed with a rare genetic eye disease and eventually will go blind, news agency SWNS reported.
Understanding Stargardt Disease: A Personal Battle
Stargardt disease is not just a technical term; it represents a reality that affects one in 10,000 individuals. This inherited condition arises from the accumulation of fatty material on the macula, which is crucial for central vision. Tilly, hailing from Peterborough, England, is intimately familiar with this struggle. Aged only 17, she has recently received the heart-wrenching news that not only her central vision is affected, but also her peripheral vision is deteriorating rapidly.
Facing the Future with Grit and Determination
“The news has put into perspective that life is short,” she shared, revealing a wisdom that belies her years. As Tilly contemplates her impending blindness, an urgency pulses through her veins—she yearns to see the world and all its wonders before darkness envelops her. The reality of her condition has propelled her into action, igniting a desire to visit iconic places like Walt Disney World in Orlando, Florida, and the breathtaking beaches of Dubai.
A Wish List of Dreams and Memories
“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. I have been obsessed with beaches and planes since childhood,” she reflects, articulating her dreams with unbridled passion. Tilly has always harbored aspirations of becoming a flight attendant. It’s a role that not only aligns with her fascination for travel but also speaks to her adventurous spirit.
Born with Stargardt disease, she recounts how the signs were evident from a young age, though doctors labelled her issues as mere “behavioral problems.” From bumping into furniture to sitting uncomfortably close to the TV, each experience was a call for help, a plea for understanding in a world that felt increasingly blurred. “At seven,” she noted, “I still could read normal-sized text but struggled tremendously with spatial orientation.”
Resilience and the Power of Community
As she continues to navigate her circumstances, Hayward has become an advocate for herself, learning vital skills such as Braille and slowly coming to terms with her visual impairment. “I have some vision, but it’s not clear or normal,” she admits. Instead of allowing her condition to box her in, she embraces her truth, defying the stigma surrounding disabilities. “I didn’t want to admit that I was blind until I was 15, but I now realize that you can still achieve amazing things despite your challenges,” she explained with newfound confidence.
A Fundraising Effort with Heart
Tilly has launched a GoFundMe campaign, aiming to raise £2,000 (approximately $2,500) to support her dream travels. As of early this week, she has already gathered £1,490 (about $1,850), a testament to the compassion of a community standing by her side. “My biggest dream as a little girl was to visit Florida,” she reflected, confessing her love for Disney, especially Cinderella Castle. “Though I know I may never see it, even just listening to the music would be incredible,” she remarks, blending optimism with an undertone of acceptance.
A Message of Hope and Resilience
On her fundraising page, Tilly penned a heartfelt wish: “I would love to see the sand beneath my feet for the last time and feel the warm breeze on my face, surrounded by my family.” Her words echo a universal longing for connection, beauty, and shared moments. “If anyone is facing sight loss, remember—it feels like the world is ending, but a disability doesn’t define your potential,” she advises, inspiring others to embrace their journeys.
“You can adapt and learn to live with it. If I hadn’t lost my sight, I wouldn’t be the person I am today,” she concludes, her resilience shining like a beacon. May her journey inspire compassion and action in a world that can sometimes seem indifferent to the struggles others face.
As the National Eye Institute states, Stargardt disease often starts in childhood—but for some, signs only emerge in adulthood. While no cure exists, vision rehabilitation can help individuals navigate their world. Cleveland Clinic further notes various aliases for the ailment, connecting it intimately to genetic factors regarding vitamin A usage—reiterating the complex web of science woven into personal stories like Tilly’s.
