Fundraising event for charity that supports tot with rare condition
UP Holland Labour Club will host a fundraising event on Sunday, August 19 in aid of the Amy and Friends Cockayne Support group who have helped Skelmersdale youngster, two-year-old Lily-Mae Esfandiary-Bilvee who has the rare genetic condition, Cockayne Syndrome.
Lily’s nan, Sue Hodson, said: “Lily has a life-limiting condition that affects just one in 100,000 people.
“We organise this day to give something back to Amy and Friends because they do so much for us. Also it helps to raise awareness of Cockayne Syndrome which is a condition not many people know about.”
Cockayne Syndrome is characterised by a failure to gain weight and grow at the expected rate leading to very short stature, and delayed development.
Lily, who can’t sit up or stand and weighs just a little more than 14lbs, is classed as having the development of a 12-month-old child.
During the fundraising event, which will run from noon to 5.30pm, there will be a DJ, a funfair, inflatables, live singers and dancers, stalls, a raffle and an auction.
The auction will take bids for a number of items including a five-day holiday to Tenerife; two tickets for an executive box at Manchester United tickets with food and drink provided worth £200 each; a round of golf for four people at Dean Wood golf club; and a TV.
Amy and Friends are hoping to buy fibre optic equipment for Lily's bedroom to provide stimulation for her. They have also bought her a specially-adapted car seat.
The charity are also organising a three-day conference in Chester, which starts on Monday, August 13. The conference allows parents, who have children with the condition, to talk to each other as well as specialists.