A BURY charity organised their first ever weekend retreat for families affected by the life threatening genetic disorder Vascular Ehlers-Danlos Syndrome (EDS).

Founders of Annabelle's Challenge organised for 30 families to travel to Blackpool for a holiday. Their visit included a private tour of the famous Illuminations on a vintage 1935 tram.

A total of 38 children were entertained during the weekend and enjoyed a meet and greet with the charity's mascot Toby.

The group stayed at The Cliffs Hotel on the promenade, and during their visit heard talks from Dr Neeti Ghali and Dr Fleur van Dijk.

Shaun Wallwork, a family member who attended, said: "It was an awesome weekend with some amazing people. Well done for arranging it.

"It was great to hear so many funny, as well as heartbreaking stories, that have happened to everyone with vEDS."

Annabelle's Challenge was set up five years ago by Jared and Sarah Griffin, whose daughter Annabelle suffers from Vascular EDS (vEDS).

The condition is a life threatening connective tissue disorder which causes collagen deficiency and means that Annabelle is at daily risk of her internal organs and arteries spontaneously rupturing.

Mr Griffin said: "It was so lovely to see our extended vEDS family come together for a weekend retreat, a follow up to our successful first ever conference held last year at the Village Hotel Bury.

"The weekend was a rare opportunity for people affected by the condition to meet one another for the first time and make life-long friendships.

"Thank you to our supporters, volunteers and all the staff at The Cliffs for making our weekend so special for our families."

The visit, on September 14-16, was funded through monies raised by Annabelle’s Challenge and The Leys School, Cambridge, in memory of pupil Carl George who died of vEDS in March 2017, and also a £1,000 donation from the East Lancashire Masonic Charity, Bury District Freemasons.