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A 17-year-old girl is on a mission to see as much of the world as possible before she loses her eyesight completely. Tilly Hayward, who hails from Peterborough, England, has been diagnosed with Stargardt disease, a rare genetic eye condition that will eventually leave her blind, according to reports from news agency SWNS.
Stargardt disease affects about one in 10,000 people and is characterized by the accumulation of fatty material in the macula—the part of the retina essential for central vision. While most people with this condition retain their peripheral vision, Hayward’s diagnosis revealed that her peripheral vision is deteriorating rapidly.
Last November, she received the devastating news that would change her life forever. “The news has put into perspective that life is short,” Hayward shared. This realization has propelled her to embark on a journey to experience the wonders of the world while she still has the opportunity.
Uncertain about how much longer she will be able to see, Hayward has initiated a fundraising campaign to support her travel aspirations. On her list of must-see destinations are iconic spots like the Walt Disney World Resort in Orlando, Florida, and the picturesque beaches of Dubai.
“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,” she expressed, highlighting her long-standing fascination with beaches and planes. Hayward has dreamt of becoming a flight attendant since childhood.
Hayward was born with Stargardt disease, a condition her parents unknowingly passed on to her. Ever since she was four years old, people around her noticed something was off with her eyesight. Despite her struggles, initial visits to opticians only led to recommendations for glasses.
By the age of seven, she began to experience significant challenges, describing moments of bumping into obstacles and sitting extremely close to the television. Yet, she could still read normal-sized text.
Classmates would often prompt confusion when they received instructions that Hayward found impossible to follow due to her sight impairment. After being reassured she had ‘behavioral problems’, her family sought help from specialists, ultimately leading to a formal diagnosis when she turned nine.
“I have no central vision, and my peripheral vision is like a spiderweb,” Hayward explained. Although she retains some vision, it is not clear or normal. The disease has encroached on her peripheral vision, surprising her doctors during a scan in November 2024.
Despite her challenges, Hayward has learned Braille and is preparing for her exams. She admits the journey hasn’t been easy, often grappling with feelings of embarrassment over her blindness. However, engaging with individuals facing similar challenges has encouraged her to embrace her condition.
“I’ve realized you can still achieve amazing things,” she stated, crediting her mother as her staunchest supporter.
Last year, Hayward traveled to Spain, an experience she described as both wonderful and arduous. She recalls joyous moments from childhood vacations, where her ability to see was much greater than it is now.
Determined to make the most of her remaining vision, she finds ways to connect with her surroundings, even if they no longer rely heavily on sight. Sounds become her guide, especially at the beach.
The emotional toll of her condition has weighed heavily on Hayward. She has battled severe depression and an eating disorder, yet she emphasizes the importance of expressing her feelings and finding ways to cope with her situation. Recently, she launched a GoFundMe page to facilitate her travel plans, quickly raising £1,490 (nearly $1,850), edging closer to her goal of £2,000.
As a longtime Disney enthusiast, Hayward dreams of visiting Disney World and experiencing Cinderella Castle, even if just through sound. She fantasizes about witnessing the crystal-clear oceans and the joyful smiles of her family at sunset on a beautiful beach.
“If anyone experiences sight loss, it can feel overwhelming. It takes time, but realize that a disability does not define you. Adapting to it opens new perspectives,” Hayward advised, illuminating her optimistic outlook on life despite her challenges.
Central to her message is the belief that people can live fulfilling lives despite disabilities. A supportive community surrounds her, offering encouragement and hope. She recognizes her evolving identity shaped by her experiences and is ready to explore the world while she can.
As Hayward embarks on her adventure, she remains a beacon of resilience and courage, demonstrating that challenges can give way to remarkable journeys.