Dedicated parents have set up a charity in a bid to provide specialist respite care for people like their daughter.
Judith and Kenny Briscall, of Hopkinson Terrace, Trawden, created Alice’s Army UK for those with Prader-Willi Syndrome.
Their 33-year-old daughter Alice was diagnosed with the rare and complex chromosome disorder as a youngster, which means she requires 24-hour support.
While there are a few larger providers of residential care for people with PWS, there is currently no dedicated specialist respite provision for people with the disorder in the whole of the United Kingdom.
And although people with PWS can use existing respite facilities, it is not the safest option, since they have particular needs regarding food security. It is Mr and Mrs Briscall’s aim to remedy this situation.
The couple have already set up the bank account, developed a constitution, and found trustees, and they are now in the progress of raising the £5,000 needed to make them a registered charity.
From there, they will be working to raise enough money to establish a service for people with PWS - which can hopefully be based in Pendle.
Mrs Briscall (55), a former music teacher at Nelson and Colne College and Giggleswick School, said: “We want to raise enough money to establish a service where people with Prader-Willi Syndrome could go for a short stay. A place where a stay could be planned and booked in advance, just like in a regular guest house, but in an environment where guests could be safe because their needs would be catered for by trained specialist staff. The peace of mind this would give to families would enable them to enjoy a little normality away from the restrictions that living with PWS imposes.
“There is specialist residential care but what about the people who don’t want to live in residential care like Alice?
“I think Pendle is an ideal location, and it is central for the North of England. We have a lovely countryside, a great community, and it is within an hour of Leeds, Manchester and Preston.”
Mrs Briscall was inspired to take the step to set up a charity following an incident in October, when Alice was taken ill.
The mum, who takes yoga classes with her daughter every Wednesday at Barnoldswick’s Rainhall Centre, said: “I was on the way back from hospital when I got a call through to say Alice wasn’t well and that she had collapsed. It was very scary, she had to be resuscitated and she was blue-lighted to hospital, and they couldn’t actually find any cause.
“That episode made my brain go into overtime and I thought if I don’t set out and do it, who else is going to?”
More than £500 has already been raised for Alice’s Army, and Mrs Briscall is offering to give talks to local groups on the subject “Prader What?: ‘The Story of Alice’s X Factor’.
Businesses are beginning to throw their weight behind the charity, and individuals are pledging to raise cash - with one person offering to run a half marathon for the cause in April.
If Mr and Mrs Briscall’s goal proves impossible to achieve, the charity will be disbanded and money raised will be passed to the UK Prader-Willi Syndrome Association. To make a donation or to book a talk visit www.alicesarmyuk.co.uk