Community rallies with fun day to support Leeds toddler Connie Annakin fighting rare Batten disease

A fun day is to be held this weekend as an entire community rallies to support the family of a Leeds toddler battling a rare disease.

Friday, 4th October 2019, 11:52 am
Updated Monday, 7th October 2019, 10:41 am

While the NHS is to cover treatment, the agreement doesn't include the cost of transport and overnight stays, and Connie will have to travel to the London hospital once a fortnight for the rest of her life.

With mother Caroline Day having to give up her career as community manager at WizuWorkspace to care for Connie, friends, neighbours and complete strangers have rallied to help.

Caroline Day, of Farsley, Leeds, is mum to three year old Connie Annakin, who was born with a rare condition Batten disease. The family have been battling to access life saving drugs which could extend her life by 30 years. After a long hard fight the family have finally been told that Connie has been granted the drug, and plans are being drawn so she can start treatment at Great Ormond Street. Image: James Hardisty

Sign up to our daily newsletter

The i newsletter cut through the noise

Hundreds have backed the appeal ahead of a community fun day on Sunday, with promises of pledges and donations from celebrities including Leeds Rhinos players, famous psychics and DJs, and even Cbeebies' Mr Tumble.

Debra Caveney, who had never met the family before hearing of Connie's battle, has helped to organise Sunday's event.

"People want to help, this is what community is about," she said. "I have six children, I know I'd hope if ever anything happened to us, someone would come forward to help.

"And I just love our community when it comes together, that's so important."

Fun day for Connie

Connie's Day is to be held at the Bramley Phoenix Rugby Club, from noon until 4pm on Sunday, and there will be bouncy castles, a storytelling corner, food and stalls, raffles and tombola.

Among prizes pledged are a signed shirt and match tickets from Leeds Rhino Jamie Jones-Buchanan, with Ashton Golding also raffling a T-shirt, vouchers, a television, and a reading with television psychic Barrie John.

Connie's fight has inspired thousands of people across the Farsley community and beyond.

The fun day comes after colleagues at Miss Day's former workplace raised £2,000 for Connie to have a holiday this summer, with staff at Farsley Travel, on reading her story, secretly arranging for the family to be greeted with special treats at the airport and while they were away.

The Pudsey Beavers group, also on reading Connie's story, have made the little girl an honorary lifetime member and gifted her with a blanket of badges after writing to clubs around the world.

'Overwhelmed'

Miss Day, overwhelmed, has said she cannot thank everybody enough, from the doctors to nursery workers and all the people who had helped.

She noted in particular campaigning work from MP Stuart Andrew and case worker Stephanie, whom she had called in tears after hearing that Connie was to be granted treatment.

"Thank you to the Yorkshire Evening Post for getting the story out there, for changing awareness and for creating that community support," she added.

"The support that we've had from people, from family and friends and the MP, has been absolutely amazing.

"Something good has come out of this. As a family, we have so many new friends."