Some of the families enjoying the retreat
Families from around the world living with Cockayne syndrome had the chance to meet at the Amy and Friends' retreat, thanks to funding from Jeans for Genes.
Cockayne syndrome is a premature ageing disorder that leads to a shortened life expectancy.
There are types I, II and III which vary in their severity but despite the physical and developmental difficulties they cause, the children are all very happy and loving.
It's a very rare condition, affecting just 1 in 560,000 children so events like this are crucial in helping families feel less isolated.
"Our retreat was fabulous," said founder of Amy and Friends, Jayne Hughes. "We were joined by both new and existing families and it was a pleasure to see everyone there."
"Meeting each other on the first day was like meeting up with your long
lost friends and for the children - some of whom had never met another
child like them - this was an indescribably amazing feeling."Jayne Hughes, Amy and Friends
Families and medical experts met each other. It's hoped that children from the UK can soon be part of a trial in Manchester and Strasbourg that aims to slow down the ageing process and help children lead longer lives with far fewer neurological problems.
"In previous years we've had to fund the retreat more or less out of our own pockets," said Jayne. "The grant we received from Jeans for Genes was so important to us. Thank you times a million for helping us to make it possible."