Foley 2012 The Right To Eat Facebook Group
A 17-year-old girl faces spending the rest of her life being fed by a tube into her stomach after the NHS refused to carry out an an operation.
Ayllah-Beau Foley from Cheltenham cannot keep down food or drink due to gastroparesis - a rare condition which she developed two years ago.
The teenager spends 18 hours a day attached to a line going into her stomach, despite doctors recommending she has pioneering £30,00 surgery to fit a pacemaker into her gut.
The NHS in Gloucestershire turned down her request for the operation on the grounds she can maintain her weight through the present feeding tube system she has in place.
Ayllah-Beau says that she currently has no life and the surgery would allow her to live normally. She told her local paper: "I spend my life in bed or at hospital. I am finding it really hard to cope. I do not sleep well and I cry all the time.
"I cannot understand why they won't give me a chance of getting through life with some normality."
Foley 2012 The Right To Eat Facebook Group
She was ill for two years before her condition was diagnosed eight months ago, and she has been progressively getting worse since.
Her mum, full-time carer Christine, said she was 'devastated' at the NHS's decision, claiming that the board had never met her daughter or seen what an awful effect her illness has had on her. She said that Ayllah-Beau was 'so desperate' she had even considered 'turning her feed off' to make the NHS do something.
Speaking to Parentdish this morning, Christine said her daughter was being denied a 'fundamental right to eat' and that her condition was having an effect on the whole family:
"Her 16-year-old brother goes elsewhere to eat now, he feels so guilty enjoying food in front of Ayllah-Beau," Christine said, "And Ayllah will smell the food I am cooking and ask why I am making her favourite things when she can't eat - but obviously we have to still eat, but it is so cruel when it could be fixed."
Christine - who told us that even her GP was 'stunned' by the NHS's decision - said that continuing to feed six-stone Ayllah's through a tube will cost the NHS more over time than the surgery would, saying: "She has to have the tubes replaced every 12 months with an anesthetic every time and of course the risk of infection. At Christmas she was in hospital for two weeks - it's hardly a cost effective treatment for her in the long run.
It is heartbreaking to see your child not given the chance to get her life back. We know they have budget restrictions, but she has a right to have a chance at a normal life.
"It's strange because her brother Jordan is in the Army and while she is fighting for the right to eat, he is fighting for the country."
Christine wants to appeal the decision, and has set up a Facebook group 'Ayllah-Beau Foley's Fight for the Right to Eat', which has attracted nearly 5,000 friends. An online petition has also been started to try and overturn the NHS's decision.
The medical director for NHS Gloucestershire, Dr Liz Mearns, said: "NHS Gloucestershire's priority is to ensure the best clinical outcomes for patients and we take our responsibilities very seriously.
"Where a treatment is not routinely funded, we have a hearing process in place, involving clinicians, to look at individual funding requests and consider exceptional circumstances."
What an awful condition for someone so young to have to endure. What do you think? Should the NHS fund this operation?
You can contact Christine on 07917 247833 or request to join the Facebook group.