Family desperate to take girl, 5, to Disneyland before she goes blind due to rare disease


During the pandemic Addy Clarke, from Thatcham in Berkshire, was diagnosed with a rare illness called Batten Disease that only affects 150 people in the world

Addy Clarke
Addy was diagnosed with a rare illness called Batten Disease during the pandemic

A family is trying to raise enough money to take their young daughter on her dream trip to Disneyland before she goes blind.

Addy Clarke, five, from Thatcham in Berkshire, was diagnosed with a rare illness called Batten Disease during the pandemic.

It only affects around 150 people in the world and will mean she will lose the ability to walk and talk, see colours, swallow, use pens, and go to the bathroom.

There is unfortunately no cure for the disease, reports Berkshire Live.

Addy’s father David Clarke and his partner Hayley want to take her to Disneyland so she can physically see and interact with her favorite Disney characters before she goes blind.

Their friend Sue has now set up a GoFundMe page for the family after hearing about their plans.

Addy’s condition means she will lose the ability to walk and talk
(

Image:

David Clarke)

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.”

Addy was diagnosed with Batten disease in September 2020 during the height of the pandemic.

She was just four at the time, and later had brain surgery on October 15, 2020.

The disease means that Addy is cognitively about 18 months old even though she’s now five.

Addy’s family want to take her to Disneyland before she goes blind
(

Image:

David Clarke)

Since the diagnosis, Addy and her family have been traveling to St Ormond’s Street for fortnightly treatment and checkups.

David said: “Whenever you see programs like Children in Need, you never expect that you will walk down the halls and operating theaters that you see on those kinds of shows.

“Every two weeks since diagnosis we’ve been traveling 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 strange 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.

The GoFundMe page their friend Sue set up has now raised around £3,300. The original target was £2,500 when the page was set up a few weeks ago.

David said he was warmed by people’s generosity, as a lot of parents who he and his partner helped as youth workers have donated.

The Clarke family also has a Facebook page called Addy’s Batten Adventure which documents Addy’s treatment and raises awareness of the rare disease.

To donate to Addy’s Disneyland trip click here.

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www.mirror.co.uk

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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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