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Emma Merchant (left) and her daughter, Lily-Rae, who lives with an eye condition, were left in tears after actress Kate Winslet donated to their fundraiser (Emma Merchant)
Emma Merchant
A schoolgirl with a rare eye condition and her mother were “in tears” after actress Kate Winslet donated thousands to their fundraiser.
Lily-Rae Merchant-O’Hanlon, 11, from Nottingham, was diagnosed last December with Stargardt disease, an inherited eye condition which causes blurriness in the central part of the eye.
Her mother, Emma Merchant, set up a GoFundMe to help Lily-Rae see the Northern Lights for the first time before her eye condition, which affects one in 10,000 people according to the Macular Society, worsens.
The pair were overwhelmed to see a £5,000 donation and a personal message from Titanic star Winslet.
Lily-Rae Merchant-O’Hanlon, 11, lives with Stargardt disease, an inherited eye condition affecting vision in the central part of her eyes (Emma Merchant)
Lily-Rae told the PA news agency: “We were shocked. We were both in tears.”
Ms Merchant, 45, an executive assistant and DJ, added she was overwhelmed and said the personal message from Winslet was “so special”.
She told PA: “We’re very overwhelmed. The donations we’ve had have been absolutely appreciated.”
“To have somebody such as Kate Winslet… I cannot explain how much I respect that woman as an actress, let alone now as an individual as a human being, to be so generous.
“She sent a lovely message as well. To have made so personal was just so special.”
On GoFundMe, Winslet wrote: “Wishing Lily-Rae some magical adventures so she can make many special memories to treasure! With lots of Love, Kate Winslet and family.”
Ms Merchant created the fundraiser to allow Lily-Rae to have new experiences and see new places before her eye condition deteriorates further.
The mother and daughter created a list of things they want to experience including a safari because of Lily-Rae’s love of cats, but said seeing the Northern Lights was at the “top of the list”.
“I would say this (fundraiser) is important for us because then I can see the world before my vision goes and my mum can also experience with me and I can just have mental memories and also muscle memories of all the different experiences,” Lily-Rae explained.
Ms Merchant added: “It means the world because I can’t do this on my own.
“For me, it’s the 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’.”
Ms Merchant noticed her daughter’s poor eyesight when she was aged five after Lily-Rae struggled to read at school and described her diagnosis as life-changing.
“It’s changed my life upside down as a parent,” she explained.
“Now it’s all about what we can do together and have those memories. I want to live for today. We both live for today.”
Emma Merchant’s fundraiser aims to raise money to help her daughter, Lily-Rae to try new experiences before her eye condition worsens (Emma Merchant)
Lily-Rae explained her condition does not affect colour, but she does struggle with depth perception – only being able to see from three metres or less and said she uses a font size 64 to read her laptop.
The 11-year-old now uses a cane and is learning Braille, but hopes sharing her story will debunk some misconceptions about people with sight impairments.
Lily-Rae said: “So many people assume if you’ve got a cane, you’re probably blind. People think I can’t see them, but I can.
“They look at me confused because I will be using (the cane) one minute and then holding it up the next.”
The school pupil hopes to change people’s perspective about impairments and wants to detach the negative connotations often associated with disabilities.
“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,” she said.
Ms Merchant added: “I think people say, ‘oh gosh, what’s she going to do in life?’ She can do anything she wants.
“From a non-visually impaired person looking and spending the last year watching her adapt and seeing how she’s amazingly changing and adapting, it’s been one of those situations where she’s very positive about it.”
Lily-Rae hopes her story will inspire people with and without impairments to find their purpose in life.
“Even if you feel like you can’t do something or you feel like you don’t have any worth in life, which some people can just feel like that, realise that there is a purpose for your life. You’ve just not found it yet,” she said.
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