A family is raising money to take their five-year-old daughter to Disneyland so she can meet her favourite characters before she goes blind.
Addy Clarke, from Thatcham, Berkshire, was diagnosed with a rare disorder in 2020 called Batten Disease which affects around 150 people worldwide.
Her father, David Clarke said Addy would lose the ability to walk and talk, see colours, swallow, use pens and go to the bathroom due to the disorder which currently has no cure.
That is why David and his partner Hayley are set on taking Addy to Disneyland, so she can meet her favourite characters before she loses her vision, reports Berkshire Live.
David said: "Addy absolutely adores the Lion King and any kind of Disney princesses as any young girl would.
"She adores Disney, we've been to see The Lion King on the West End and she just was mesmerized.
"So Sue, who's created the family fundraiser for us, contacted us and said she'd love to help us."
Sue set up a GoFundMe page for the family as David told her that they'd love to take Addy to Disneyland "so we can see the delight on her face at seeing the Disney productions in real life".
Addy was diagnosed with Batten disease during the height of the pandemic when she was four-years-old.
She was diagnosed in September 2020 and had brain surgery on October 15, 2020.
The disease means that Addy is cognitively about 18 months old even though she's aged five.
Since diagnosis, Addy and her family have been travelling to St Ormond's Street for fortnightly treatment and check-ups.
David said: "Whenever you see programmes like Children in Need, you never expect that you will walk down the halls and operating theatres that you see on those kinds of shows.
"Every two weeks since diagnosis we've been travelling in via public transport.
"When Omicron and other variants have been at their highest, we've had to drive in which can take three-and-a-half to four hours.
"It's been a very bizarre time. "
David also said that they've only been to St Ormond Street during the pandemic so it's been like a "reverse culture shock" to have restrictions gradually lift as time has gone on when they've visited the hospital.
As Addy's disease worsens, the family are hoping to take her on a Disney trip soon and the GoFundMe page their friend Sue set up has now raised around £3,300, at the time of publication.
The original target was £2,500 when the page was set up a few weeks ago.
David said that a lot of parents, whom he and his partner have helped as youth workers, have donated and mentioned that he was warmed by people's generosity.
Family friend Sue has also organised an event which will be taking place this Saturday evening (February 12) at Newbury and Thatcham Hockey Club.
There will be local musicians playing and the room will be Disney-themed and all money raised will go towards Addy's trip.
The Clarke family also has a Facebook page for Addy called Addy's Batten Adventure which documents Addy's treatment and raises awareness of the rare disease.
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