Kate Winslet helps girl with rare eye condition tick off her 'visual bucket list'
Watch: School girl with rare eye condition ticks off visual bucket list
A school girl, who is losing her sight, was left stunned when Kate Winslet invited her for a night at the theatre to help her fulfil her "visual bucket list".
Lily-Rae Merchant-O'Hanlon, 12, from Nottingham, was diagnosed with Stargardt disease last December. The inherited condition causes blurriness in the central part of the eye. Whilst people with Stargardt’s do not lose their peripheral (side) vision, many people will reach the point of severe vision loss.
Following Lily-Rae's diagnosis, her mother, Emma Merchant, decided to set up a GoFundMe to help her daughter enjoy as many visual experiences as possible before her sight worsens. Her first trip was to see the Northern Lights thanks to a £5,000 donation from Titanic actor Kate Winslet.
The Oscar-winning star was so touched by Lily-Rae’s brave battle she also invited her to join her for a night at the theatre. Lily-Rae and her mum travelled to London to meet Kate before the trio watched My Neighbour Totoro at London’s Barbican Theatre last month.
Before the show, Winslet posed for pictures with Lily-Rae, with her mum commenting on how "welcoming" the actor was. "It just felt like we'd known each other forever," she says. "It sounds like a funny thing to say, but she was just very normal, very humble. We are so grateful to her for her donations and help in raising the profile of Lily’s condition."
As well as the trip to the theatre and her donation, Kate also arranged for Lily-Mae to tick off another item on her list - feeding tigers at Knowsley Safari Park. Emma says her daughter did a thank you card for Kate and her family in Braille. "We also gave them the Braille alphabet as well so they've got to go away and decipher the message," she explains.
So far Emma has managed to raise more than £10,000 to help fund her daughter undertaking a list of fun activities before her sight deteriorates. Earlier this year the family travelled to Finland to fulfil Lily-Rae's dream to see the Northern Lights and she now hopes to see Paris from the top of the Eiffel Tower and go on a safari in Kenya.
Emma, an executive assistant and DJ, said she is determined to give Lily-Rae as many new experiences as she possibly can. "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," she explains. "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 initially 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, which affects one in 10,000 people, according to the Macular Society.
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 struggles, brave Lily-Rae refuses to be downhearted. "If there's anything you feel is wrong with you, it's not a disability and no one should see it as a disability," she says. "They should see it as an ability."
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