A family has raised nearly £50,000 to try and find a cure for their daughter who hasn’t been able to eat – for SIX YEARS.
Pretty Ayllah-Beau Foley, 22, developed a rare condition which paralysed her stomach when she was just 16.
Her weight dropped to less than 6st and she was able to fit into clothes for ten-year-olds before doctors diagnosed her with the rare ailment.
Ayllah-Beau was fed nutrients through a tiny feeding tube directly into her heart until a near-fatal bout of septicaemia in April.
Now she relies on a painful tube directly into her bowels meaning she has dropped to a size six, but her parents say the potential for a cure in the future keeps her going.
Mum Chris and dad Neil have so far helped raised £46,000 over the last two years for St Mark’s Hospital in London where their daughter is treated.
Doctors there are working on a ground-breaking project to use stem cells to grow new bowel tissue, which could provide her with a cure in the future.
They are now finalists in the running for a competition to win a further £10,000 towards their total.
Ayllah-Beau, from Cheltenham, Glos., said: “St Marks have been part of my family for several years now.
“They work tirelessly to support me and my family so I’m really pleased that as a family we are able to give something back.
“My doctor Dr Gabe is amazing and always lifts my spirits with his positive outlook.
“This year has been very tough but it has given me a new found appreciation of life.”
Food-lover Ayllah-Beau was planning to go to chef college when she was struck down with a ‘tummy bug’ following a trip to India.
Her family initially thought it was ‘Delhi belly’ but when she continued to vomit doctors diagnosed acid reflux and then appendicitis.
But after 18 months of tests – and an operation to remove her appendix – they finally diagnosed gastroparesis, a rare condition which paralyses the stomach muscles.
Every time she eats her stomach can’t process the food, leaving it sitting undigested in her tummy, until she vomits and doctors have no idea why she developed the condition.
She tried various treatments including a gastric pace maker, but nothing worked.
“The hardest thing for her at the time was not being able to eat the foods she liked,” said mum-of-seven Chris.
“She really loves food and watching her friends, Christmas dinner, her 18th birthday – it was all tough.
“She knew if she ate, she’s have to pay for it later.”
Three years ago she was given a tube which feeds nutrients into her jugular vein and transports them to her heart and the rest of the blood stream.
But the line leaves her highly susceptible to septicaemia and she almost died when she caught her FIFTH bout of the blood poisoning in April.
Mum-of-seven Chris said: “There was a 30 per cent chance of survival.
“We all pulled together as a family and supported each other, but a few days later, once things were looking a bit better that’s when I crumbled.
“It makes you appreciate what you have got.”
Doctors said they couldn’t risk another bout of septicaemia so fitted Ayllah-Beau with a tube which goes down her nose directly into her bowels to keep her alive.
But the tube leaves her in a lot of pain, meaning she has to take strong medicines, which often leave her unable to get out of bed.
“It takes a lot of planning if she wants to go anywhere, because she has to go without pain relief so that she can wake up and get out of bed,” said Chris.
“It is not ideal.”
But despite her difficulties, her family remain positive by raising money for research at St Mark’s Hospital.
The tissue engineering project hopes to one day use a patient’s own stem cells to grow bowel tissue to replaced diseased parts of the organ.
“This is the way forward,” said Chris.
“It is not just for my daughter – it’s for people with bowel cancer. It is such a taboo subject, and the work that they do is outstanding.
“It keeps us all going. She has got so used to it now and she is always smiling and laughing and being upbeat.”
Neil, a property maintenance worker, will be taking part in the Great North Run to raise money for the hospital project.
He is currently in the running to win £10,000 more for the charity after he made it through to the final ten of the Mountain Warehouse Charity Challenge.
The competition sees people vote for the charity fundraiser that they would most like to see receive the money.
So far the family has 1,211 votes and are in third place.
To vote visit: www.mountainwarehouse.com/competitions/charity/entries/great-north-run-e3185/
To donate visit: www.justgiving.com/fundraising/neil-foley7
