A BURY family are celebrating three years of raising awareness of their daughter's rare and life-threatening condition.

Jared and Sarah Griffin were first told in December, 2012 that daughter Annabelle, then aged three, had Vascular Ehlers-Danlos Syndrome (VEDS) — meaning the slightest knock could send her to hospital.

The incurable genetic condition causes collagen deficiency and means she is at daily risk of her internal organs and arteries spontaneously rupturing.

In the weeks after Annabelle's diagnosis, her parents set up Annabelle's Challenge and have since seen it grow into a registered charity with thousands of supporters.

Mr Griffin, of Wilby Close, said: "Annabelle was diagnosed a week before Christmas in 2012, which really wrote off the Christmas period for us. But part of that was starting to research what the condition was all about and coming across all kinds of doom and gloom.

"Because of that, we were inspired to start Annabelle's Challenge that January to raise awareness. From the first time we were in the Bury Times in the April, things have propelled really quickly to where they are today.

"We never expected that it would be so big and become an actual charity."

The charity is now in direct contact with 25 people in the UK suffering from VEDS and its founders are in the process of organising a VEDS conference in Bury next year.

He added: "We have started to visit some of the people who we are in touch with to offer them support and give an update on what our plans are for the future.

"It means we can share our journey up to now and help to them to put a plan in place.

"Sarah and I have been to see one girl who has been in hospital for many months now to gain a better understanding of what the condition is and what we can do to help.

"Our big aim now is to get a conference organised for May 2017 and there has been a lot of time and investment put into that already. It will be in Bury because it's important that we recognise where the charity has come from.

"We have also started taking inbound calls from families affected by VEDS and have had two very significant calls in the last couple of weeks.

"There are moments when we can feel a bit down ourselves but then a call comes in and we spring into action."

Annabelle's Challenge will he holding a Masquerade Ball at the Village Hotel on April 23, the proceeds of which will go towards funding next year's conference.