Alice Briscall has needed round-the-clock care for all of her 33 years because of a rare chromosome condition known as Prader-Willi Syndrome. The condition is so rare that when she was born it was virtually unheard of.
These days, much more is known about it, but the need for constant care – both for Alice and others like her – is no less important.
And so a potential charity called Alice’s Army UK is on the march to gain official charity status and provide a residential home where people with the condition can be cared for, giving a spell of respite for their families.
The campaign was started by Alice’s parents Judith and Kenny Briscall, who live at Trawden, Colne, and they have recruited a small army of supporters to help raise the £5,000 they need to register as a charity. So far, they are almost half way there.
Prader-Willi Syndrome – known as PWS – was named after the two Swiss doctors who first described it, and is a chromosome disorder which affects the hypothalamus – the part of the brain which controls appetite, growth, and physical development.
People with PWS are born ‘floppy babies’ and have learning difficulties, and as they grow most develop an insatiable appetite which never feels satisfied. Because of the weak muscle tone, they need only half the calorie intake of the general population, so unless they stick to a strict diet for life they face life-threatening obesity.
“The effects are apparent from birth, but when Alice was born there wasn’t a name for the condition,” said mum Judith, a music teacher. “At the time it was so unusual, and the doctors and paediatricians never suggested it because she wasn’t showing some of the classic symptoms. At the time, it was thought that it only affected boys.
“We didn’t get the diagnosis until she was 11 years old. Nowadays, we’d know within three days.”
There is no cure for PWS, and people with the condition are unlikely ever to be able to live an independent life. There is currently no dedicated specialist respite provision for people with PWS in the whole of the United Kingdom, and Alice’s Army UK has been set up to try and remedy that situation.
“We want to raise enough money to establish a service where people with Prader-Willi Syndrome could go for a short stay,” said Judith.
“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.
“At present there are a few larger providers of residential care for people with PWS. However, they do not have any dedicated spaces for people only wanting respite care. As they are profitmaking
enterprises, they prefer long term residents, rather than risking rooms being empty. They are also all based hundreds of miles away from northern England.
“We think that Pendle, in Lancashire, would be the perfect area for such a service to be located, with our beautiful countryside, friendly towns and villages, and welcoming communities.”
The fund-raising has started with small events such as car boot stalls and coffee mornings, and Judith’s friends and supporters from the music world rallied round for Musicartion, a day-long event at Holy Trinity Church, Colne, where singers and instrumentalists performed and anyone who felt like it could sit and colour some art work while the music played.
Top Argentinian tenor Roberto Lopez sang, accompanied by his wife Joanna Porter, and other performers included the Trawden String Quartet, harpist Frank Wood, pianist David Eddison, the Volante Duo and guitarist Matt Arnold, whose brother Dan, of Hilltown Studios, acted as sound engineer and recorded the event. It raised nearly £300, and similar events are likely in future.
Alice’s Army UK helpers are also running stalls at the car boot sales at Brierfield Methodist Church. Judith is also happy to give her talk Prader-What? The story of Alice’s X Factor to groups within reasonable travelling distance, in exchange for a donation to Alice’s Army UK and travel expenses.