'I want to go up Eiffel Tower before losing sight'

Emma tries not to think about the impact a rare eye condition will have on her daughter.

The mum, from Nottingham, says she fought for two years to get genetic testing for her 12-year-old daughter Lily-Rae, and was eventually told she had Stargardt disease, which causes her eyesight to deteriorate.

"We had to really push to get genetic testing and I'd prepared myself for the results, but it turned out [she] has the worst of two possible diseases," said Emma.

Knowing the impact it will have, Lily-Rae has set up a list of things she wants to see, and is now fundraising towards a trip to Paris to see the Eiffel Tower before she loses her sight.

Emma says Lily-Rae's diagnosis has forced her to work part-time from home, and it has made it difficult for her to provide the experiences her daughter dreams of.

To raise money for the trip, the mum and daughter are creating hand-made wool Christmas trees and selling them at markets and online.

Lily-Rae said she "wanted to go up the Eiffel Tower before I lose the sight".

This follows a fundraiser launched following her diagnosis in December to raise £2,500 for a variety of dream trips.

News of her bucket list reached as far as Hollywood star Kate Winslet, who donated £5,000 to the cause.

Emma says the donation paid for a trip to see the Northern Lights.

She says doctors have told her Lily-Rae's sight is more stable than it was before, however it continues to get worse and there is no way of knowing when she might become partially sighted.

Lily-Rae said: "It's very difficult for people to explain their eye condition and how they see, because it's hard for them to know normal vision, especially if they're partially sighted.

"You don't notice anything other than words changing, so you can't express it."

But Emma says she has noticed a difference in Lily-Rae's sight.

"It's difficult for her, as she doesn't know any different," she added.

"I'm noticing it. I walk in the living room and show her something, and she says she can't see it.

"It depends on light conditions, how tired she is, and how worn her eyes are.

"We don't know what will happen to her sight, she could go completely blind. It's so rare in children, and so there is no point of reference [for the disease]."

Lily-Rae and Emma have thanked those who have donated to their fundraising since they started, saying they would not be able to make memories if it was not for the generosity of others.

Emma said: "We've had such an amazing year, we've been so lucky and blessed, we want to thank everyone who's making our dreams possible."

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