Kate Winslet helping girl, 12, with rare eye condition tick off ‘sight bucket list’

A schoolgirl who is gradually losing her sight due to Stargardt disease was left astounded when her favourite actress, Kate Winslet, invited her for a theatre night. Lily-Rae Merchant-O'Hanlon, 12, is ticking off her "visual bucket list" with help from 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 courageous fight, the Oscar-winning actress also invited her for a theatre night in London. They watched My Neighbour Totoro at London’s Barbican Theatre last month.

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Winslet also arranged for Lily-Rae to feed tigers at Knowsley Safari Park, another item on her 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 help in raising the profile of Lily’s condition. Lily did a thank you card for Kate and her family but she did it in Braille. We also gave them the Braille alphabet as well so they've got to go away 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 is facing sight loss. Earlier this year, the family made a trip to Finland where Lily-Rae's dream of witnessing the Northern Lights came true.

Now, she aspires to take in the views of Paris from atop the Eiffel Tower and experience a Kenyan safari. Emma, who balances her roles as an executive assistant and DJ, is committed to providing as many experiences for Lily-Rae as possible.

She expressed: "People have been so generous and they’ve really understood what we are trying to do for Lily-Rae who is coping with her condition so well. For me, it's the matter of having a timescale. It's the 'how long have we got? ', so let's see what we can do. I said to 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 disease.

Stargardt disease is an inherited eye condition, which affects one in 10,000 people, according to the Macular Society, and causes blurriness in the central part of the eye. Doctors say that Lily-Rae’s sight is deteriorating, but it is hoped she will keep some of her peripheral vision. She can only see from 6ft or less and uses a font size 64 to read her laptop.

Despite her condition, brave Lily-Rae refuses to be downhearted. She said: "If there's anything you feel is wrong with you, it's not a disability and no one should see it as a disability. They should see it as an ability."

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