Visually-impaired girl set to lose sight creates visual bucket list

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Emma and Lily-Rae
Image caption,

Emma (left) said they "wanted to get the message out there" about her daughter Lily-Rae's condition

An 11-year-old girl who dreams of seeing the Northern Lights has created a visual bucket list of sites she would like see before losing her sight.

Lily-Rae, from Nottingham, was diagnosed with a rare genetic condition called Stargardt disease, external in December.

Doctors told the schoolgirl that her sight is constantly deteriorating, but it is hoped she will keep some of her peripheral vision.

Her mum Emma has launched a fundraiser to make her "dreams come true".

Lily-Rae started losing her eyesight when she was about five years old, but was initially told she just needed glasses by opticians.

Emma said she noticed her daughter was having more sight problems when she picked her up from school, with Lily-Rae only realising her mum was there when she was directly in front of her.

The youngster says she dreams of seeing Paris from the top of the Eiffel Tower, and would like to go on safari in Africa.

"I want to see the Northern Lights, even if it's just one time," Lily-Rae told BBC Radio Nottingham. "They are the most beautiful things. I love space and I even know how [the lights] are formed, which is very interesting.

"I want to go up the Eiffel Tower; I am horrified of heights but I would not care if I can see the beautiful view at night."

Image source, Lee Newman
Image caption,

The Northern Lights are most often seen in regions near the North Pole - but were recently captured in the UK

She added: "I would like to go on a safari in Africa; I also want to learn a few languages on my way. I definitely want to try and learn German, Russian and Thai - I just want to learn languages all over the place."

Stargardt disease, which affects one in 10,000 people, is caused by a tiny alteration in a single gene, according to the Macular Society, external.

Lily-Rae, who has started learning braille at school, says she wants to be a scientist when she is older, so she "can help find a cure for [her] condition".

Image source, Family handout
Image caption,

What people typically see from 197ft (60m), Lily-Rae cannot see until she is 10ft (3m) away or less, her mum said

A target of £2,500 has been set in an effort to fund Lily-Rae's bucket list adventure.

Emma added: "I worked in the corporate industry and career was my thing, but I'm a mum and that's what I have to put first. Even if I was working, I wouldn't be able to pay for all of the things she'd like to do.

"I felt quite bad about reaching out to people, knowing how difficult everyone has it at the moment, but [the appeal] has given me that verification and validation from people that it's something that's out of the ordinary.

"As a mum you want to protect your child and being able to take her to these places and putting those memories in the bank would be really special to both of us."

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