Thatcham child granted Disneyland wish before losing sight to Batten's Disease

Every young girl dreams of meeting real life princesses but for five-year old Addy, this dream was desired that much more due to an 'ultra-rare' health condition.

Addy was diagnosed with the genetic condition Battens disease in late 2020, when she was just four-years-old, meaning she will soon lose her eyesight.

On February 12 a charity night was held for the family, to make that wish come true, with friends and supporters using music and entertainment to raise funds for a magical trip.

The night of entertainment raised £5,390, more than double what was expected.

Addy’s parents, Hayley and Dave Clarke, lived in Thatcham before relocating to Swindon and were youth workers at Glendale Church, where Mr Clarke continues this work.

They made a video, which was played on the night, which gave everyone an insight to having a child with Battens disease.

He said: “In amongst so much heartache you really can get stuck in things.

“I think this trip for me is a chance to sit back and see Addy smile.

“I think for us to be able to watch her smile in the midst of what is such a tough journey will stick with me literally forever and that’s a gift you have given us, so thank you.”

Mrs Clarke thanked the attendees for their “extravagant generosity” and said that the family couldn’t have made the trip without their help.

She said that the child in her was equally as excited and she couldn’t wait to tell the children.

Organiser of the fundraising event Sue Smith said: “I asked Dave if there was something special they would like, rather than what they needed.

“Dave said it was their dream to take the family to Disneyland before Addy loses her sight.

“I’m overwhelmed with the response to our charity night. [The family] calculated they would need £2,500.

“Everyone has been touched by their story, and so far more than double has been raised. The latest on Monday was £5,390.”

She is continuing to raise funds for the family, to give Addy a “sturdy room” for her “much needed and bulky” equipment.

There is hope that this will incorporate a sensory room with soft floors to keep Addy safe for when she loses her sight.

Many of the attendees who helped on the night knew the family in some way. Paul Van Zyl, used to work with Mr and Mrs Clarke.

Mr Van Zyl’s daughter Megan and Josh Smith enjoyed weekly activities with the couple and wanted to now give something back, as did Barry Neman and Josh Fidler.

Ms Smith gave thanks to all who helped saying: “Thank you to the technical genius Paul Fountain, and to everyone who generously donated from their hearts to give this incredible family a big splash of joy in the stormy waters they are in on this treacherous and emotional journey.”

Addy's journey can be followed in Facebook and Instagram by searching: 'Addys Batten adventure'.

The fundraising event stream can be viewed at https://www.youtube.com/watch?v=CUIWZXaDFp8