A FAMILY day and music festival takes place tomorrow in aid of a new charity which will support young families affected by life limiting and terminal illness in South Lakes and Furness.

Joe and Connie Calling will be staged at Allithwaite Community Centre and playing fields, from 12.30pm until 10.30pm, with the proceeds going towards Butterfly Hugs.

Butterfly Hugs has been inspired by courageous siblings Connie and Joe Elson, of Cark, and the situations of other families.

Connie and Joe, the 2015 Evening Mail Christmas Star bravery winners, are battling the rare and incurable genetic condition metachromatic leukodystrophy. 

The life limiting disease has seen fun-loving Connie, seven, become totally dependent. She can no longer walk or talk, requires a feeding tube and she is losing her sight.

Connie and Joe’s parents, Nicola and Ian, are both carriers of the recessive gene and their children had a one-in-four chance of having the disease.

Joe, five, was also diagnosed with the condition, but at a pre-symptomatic stage he is having pioneering treatment in Italy as part of a clinical trial. Unfortunately, Connie’s condition is too progressed for this.

Mrs Elson and friends Rachel Pocklington and Sian Hunter have set up the charity and they are staging the second Joe and Connie Calling family day and music festival. Also, 10 per cent of the funds will be donated to the charities Reversing Retts, Jigsaw Children’s Hospice and the Cumbria Flood Fund. 

Mrs Hunter, of Allithwaite, said: "During our time promoting this very rare disease we realised that there wasn’t very much in informal support for families in Cumbria due to its graphical isolation. We also wanted to form a legacy charity so that Connie will always feature in our lives and her name will be associated with helping other children in her position.

"The charity will help people to not feel isolated and on their own, so they feel there is support.

"It's a place that people can turn to, with people who are in a similar situation. The focus is not on the illness but the people."

The festival will feature live bands from 3.30pm, including David Kay, Ulpha 590, Under Dogs, and Bare Bones.

There will also be entertainment from the start with Elite School of Dance, Grange Operatic Society, bubble football, bouncy castles, an appearance from Spiderman and Cinderella, a cake stall, a bar, hog roast and other hot food. Tickets are £2.50 for adults and children under 16 get in free.