Teenager, 17, is fed through her heart due to rare condition which stops her from digesting food
Amy had her large intestine removed after it stopped working
13:51 GMT, 1 May 2012
Amy has to be fed liquid nutrients through a tube for 12 hours a day
A teenage girl has not been able to eat for six months because of a rare condition which means her body cannot handle food.
Amy Knowles, 17, has Complex Neuromyopathic Intestinal Dismotility (CNID) and must spend 12 hours a day fed by tube to her heart which feeds liquid nutrients into her blood stream.
Doctors are baffled as to what has caused her condition and there is no known cure.
Yet every time she is connected to the feeding line she stands a high risk of killer complications like infection, septicaemia and liver failure.
Amy said: 'The hardest part of my illness is not being able to eat food, which I love.
'I still try to cook for my family and go out to restaurants with my friends and not let my illness hold me back.
'When I go out with them, I turn it into
a joke. I tell the waiters I’m just tight and can’t afford any dinner
and that’s why I’m not eating.'
Amy’s parents always knew she had trouble digesting food properly. When she was 11 doctors said they thought she had anorexia, but they were adamant this wasn't the case and sought a second opinion.
Months of investigations and tests resulted in numerous emergency procedures and operations including surgery to remove her large intestine after it stopped working.
Amy was even injected internally with Botox to try and relax her muscles but nothing has worked.
Her condition became so serious that a booked stay of five days at Great Ormond Street Hospital turned into a nine-month stint. During her stay her courage and determination touched the hearts of celebrities like The Voice UK star Jessie J
who visited her at her bedside.
Amy received a visit from Jessie J when she was at Great Ormond Hospital
Amys scarring from several operations and an ileostomy bag, left, a gastrostomy tube, for medications and drainage and just above her jeans button, a cystostomy tube for bladder drainage
She is still undergoing tests on
her condition at Great Ormond Street Children’s Hospital and must wear a backpack carrying all her nutrients when she goes out.
Amy added: 'My friends know about my condition so they joke when we go out that I look like Dora the Explorer with my backpack.'
Amy’s mother, Helen, gave up work four years ago to be Amy’s carer and moved to London while she was in Great Ormond Street Hospital to be with her day and night.
Amy said: 'I don’t know where I would be without the help my mum’s given me – she’s not just my mum, she’s my best friend. I could ask her to do anything.'
Amy (pictured today left) says she is determined to enjoy her life, despite having numerous operations that have left her with scars
Staying positive: Amy manages to lark around at hospital despite her poor health
Amy (right) pictured with her mother Helen who gave up work four years ago to care for her
Amy’s mother Helen, said: 'We know we could lose her at any time, we just don’t know what the future holds.
'I’m so proud of her – I wouldn’t be able to do what she does, she’s such a strong girl.
'The care Amy has had has been exceptional – everybody who has ever looked after Amy has been fantastic.
'While we need to look into the future, my biggest fear is that if Amy starts going downhill, there isn’t going to be any solution as to how to make her better.'
Amy and her family have had to deal
with the possibility they will never know what has caused her condition
and what the outcome will be – so now Amy tries to live each day as
fully as she can.
She said: 'I’ve got one life, I’ve just got to laugh and enjoy it.'
The family have set up a website with further information about Amy’s condition and fundraising.