A schoolgirl who is gradually losing her sight due to Stargardt’s disease is surprised when her favorite actress, Kate Winslet, invites her to a theater night. Lily-Rae Merchant-O’Hanlon, 12, ticks off her ‘visual bucket list’ with the help of the A-list actress.
Emma Merchant, Lily-Rae’s mother, had set up a GoFundMe page to help her daughter enjoy as many visual experiences as possible before her sight deteriorates further. The first trip was to see the Northern Lights, made possible by a generous £5,000 donation from Titanic star Kate Winslet.
Touched by Lily-Rae’s brave fight, the Oscar-winning actress also invited her to a theater night in London. They saw My Neighbor Totoro at London’s Barbican Theater last month.
Winslet also arranged for Lily-Rae to feed tigers at Knowsley Safari Park, another item on her bucket list. Emma said: “It just felt like we’d known each other forever. Kate was very, very welcoming, it sounds like a funny thing to say, but she was just very normal, very humble.”
She continued: “We are so grateful to her for her donations and helping to raise the profile of Lily’s condition. Lily made a thank you card for Kate and her family but she did it in braille. We also gave them the braille alphabet. so they have to go and decipher the message.”
Emma has impressively raised over £10,000 on GoFundMe to create a ‘visual bucket list’ for her daughter Lily-Rae, who suffers from sight loss. Earlier this year, the family took a trip to Finland where Lily-Rae’s dream of witnessing the Northern Lights came true.
Now she aspires to take in the view of Paris from the top of the Eiffel Tower and experience a Kenyan safari. Balancing her roles as executive assistant and DJ, Emma is committed to giving Lily-Rae as many experiences as possible.
She expressed: “People have been so generous and they’ve really understood what we’re trying to do for Lily-Rae who is coping so well with her condition. For me it’s a matter of having a timescale. It’s how long do we have?’, so let’s see what we can do. I told her, ‘I’ll do anything to get you to see the world.’
Emma noticed her daughter’s poor eyesight when she was just five after Lily-Rae struggled to read at school. After a series of tests, the youngster was diagnosed with Stargardt’s disease.
Stargardt disease is an inherited eye disease that affects one in 10,000 people, according to the Macular Society, and causes blurring of the central part of the eye. Doctors say Lily-Rae’s vision is deteriorating, but it is hoped she will retain some of her peripheral vision. She can only see from 6 feet or less and uses a 64 font to read her laptop.
Despite her condition, brave Lily-Rae refuses to be down. She said: “If there’s something you feel is wrong with you, it’s not a disability and nobody should see it as a disability. They should see it as an ability.”
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