Burnley pub customers' generous bid to raise cash for manager's son (nine) who suffers from rare syndrome
Caring customers at a popular Burnley pub are hoping to raise around £7,000 to help a little boy who suffers from a rare condition that affects one in 25,000 people.
The Cross Keys pub is the venue for a fun day on Saturday, August 24th, to raise the cash to help buy a special bed for Harley Lyth who is just nine and has Smith Magenis Syndrome, a genetic condition that affects his behaviour and speech.
One of the oldest pubs in the town, the St James Street watering hole re-opened in September, 15 months after it closed down. The news was greeted with joy by the many regular customers who have since returned there.
Harley's mum, Amy is the manager of the Cross Keys, and also Bootleggers, and when regulars heard about the daily struggles she and her husband, John, face taking care of their son they vowed to do something to help.
Because one of the characteristics of the condition is self harm, Harley needs a special bed to prevent him from hurting himself at night. Known as a SafeSpace bed they cost up to £7,000 and the bed is specially designed for children with special needs.
Amy (28) said: "Harley will often hit himself in the face, bang his head off any surface and also bite himself.
"We try our hardest on a daily basis to help prevent these episodes but we struggle to find a solution at night."
A fund raising event Amy organised just under five years ago raised enough cash to buy Harley a SafeSpace bed which changed the family's life. As the bed was so secure he could not get out of it at night which prevented him from hurting himself.
A pupil at Cribden House School in Rawtenstall, Harley needs round the clock care.
And the couple, who also have a six-year-old son called Harrison, have faced further challenges recently as Harley has started to grow out of his special bed and has been able to get out of it at night.
And Amy knew the time had come for action when Harley put his head through the bedroom wall.
She said: "I was talking to some of the regulars about what had happened and it was them who suggested another fun day to help raise some money.
"I am overwhelmed by all the help and support we are receiving from our family, friends, customers and local businesses. The lengths some of our friends are going to is really heart warming.
"The community is really coming together and doing anything possible to help us in any way they can. I would like to thank everyone involved because without them this all wouldn’t be possible. "
Along with the fun day friends and customers are doing extra challenges to boost the total raised. Becky Hartley has volunteered to have her head shaved and Aaron Hartley and Anthony Ingham will be having a leg and chest wax.
And this Saturday the trio of Danny Challener, Nik Steven Nicholson and Anthony Ingham are planning a sponsored walk from the Cross Keys up Pendle Hill and back.
The fun day kicks off at 11am and runs until late. There will be live singers and entertainment, pool and poker tournaments, a barbecue, raffle, tombola and bouncy castle.
There is also an appeal for raffle prize donations and to anyone who could help out on the day with fun activities such as face painting.
You can also make a donation to Harley's fund by going to the justgiving site https://www.gofundme.com/1pnj45etqo/