The ground-breaking charity Amy and Friends have this week welcomed guests and medical experts from across the globe as they staged their annual conference at Carden Park.

Amy and Friends is a charity set up by Amy Hughes and her family to support the families of children with Cockayne Syndrome and Trichothiodystrophy, rare disorders which are characterised by symptoms including growth failure and impaired development of the nervous system.

The way Amy and her family have tackled the disease and indeed developed their charity to help others has been an inspiration, and, in 2012, they won the Against All Odds award at the Morgan Foundation’s Entrepreneur Awards.

This was in recognition of the ground-breaking work they have accomplished with medical research into the condition, which is taking great strides in terms of understanding and treatment worldwide.

The Steve Morgan Foundation has supported Amy and Friends with funding for their ‘My Time To Be Me’ siblings club, which runs in Wallasey and Rhyl to support siblings of children with any life-threatening or life-limiting condition.

These sessions provide respite and support for children who can share common experiences of living with a disabled sibling.

“The disease is very rare and there is now a worldwide network of families who had never previously come into contact with another family,” says Jane Harris, Regional Grants Director with the Steve Morgan Foundation.

“It is wonderful to see the children when they meet another child who looks like them, as this is often for the first time in their life.

“Families attended the conference from across the world, including Brazil, Australia, Germany, Holland and the USA.

“There were also expert doctors who were present to provide updates on research and spend time individually with the parents.”

There was also time for some fun at the conference as well, with staff from the Steve Morgan Foundation and Carden Park getting involved in some flash mob entertainment.

“We loved every minute of it!” added Jane.