Teenager Seeks to Explore the World Before Losing Sight to Rare Disease

A 17-year-old girl is on a mission to travel the globe before she loses her eyesight completely. Tilly Hayward, diagnosed with a rare genetic eye condition, hopes to embrace every moment she has left with her vision.

A Life-Changing Diagnosis

Hayward suffers from Stargardt disease, a hereditary condition that affects one in 10,000 individuals. This disease causes fatty deposits to accumulate on the macula, the section of the retina crucial for central vision. While most people with Stargardt disease maintain their peripheral vision, Hayward recently learned that she would eventually go blind, prompting her to seize the opportunity to see the world.

The Impact of Stargardt Disease

Following a deterioration in her peripheral vision last November, Hayward shared, “The news has put into perspective that life is short.” Her condition is particularly challenging because Stargardt disease usually progresses gradually, making it difficult for patients to accept the impending loss of vision.

Launching a Fundraiser

Not knowing how much time she has left before her sight diminishes, Hayward has initiated a fundraising campaign to support her travel aspirations. Her dream destinations include Walt Disney World Resort in Florida and the stunning beaches of Dubai.

Embracing Life with a Positive Outlook

Hayward expressed, “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.” A lifelong passion for travel and adventure has now transformed into a personal commitment to create lasting memories.

Born with Stargardt disease, Hayward’s vision challenges became evident at an early age. Despite early suspicions regarding her eyesight, her parents were initially advised to get her glasses. However, it wasn’t until she struggled to read and navigate her environment that they sought comprehensive evaluations from specialists.

Overcoming Misconceptions

At the age of nine, after numerous tests, she received a formal diagnosis of Stargardt disease. Hayward admitted, “I have no central vision and my peripheral vision is like a spiderweb.” Though she retains some vision, she describes it as unclear. The reality of losing her sight has been a long and painful journey, compounded by struggles with depression and anorexia.

A Supportive Network

Despite these hardships, Hayward emphasizes the importance of her support system. Her mother has been her strongest advocate, motivating her to embrace her condition and pursue her goals. “Until I was 15, I was embarrassed to admit I was registered as a blind person. But now I’ve learned I can still achieve amazing things,” she reflected.

Making Memories Amid Vision Loss

In sharing her experiences, Hayward hopes to inspire others affected by sight loss. Her message resonates: “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. 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.” She is committed to making the most of her remaining vision by appreciating everyday moments.

The Dream of Travel

As part of her travel campaign, she’s already raised nearly £1,850 toward her goal of £2,000. Her dreams encompass not just visiting iconic locations but experiencing the natural beauty of the world one last time. “I would love to see the sand beneath my feet and the sunset with my family’s smiles nearby,” she stated.

Advice for Others Facing Similar Challenges

Hayward advises others grappling with similar diagnoses to find hope and strength. “You can learn to live with it and adapt,” she emphasizes, reminding everyone that their circumstances do not define them.

Time to Reflect and Move Forward

Hayward’s story stands as a testament to resilience and the human spirit. As she pursues her dream experiences, her journey urges others to appreciate the beauty and adventures life offers, even amid daunting challenges. Her tale reminds us all that it’s never too late to chase our dreams and learn to embrace life fully, no matter the obstacles we face.