A three-year-old boy is unable to eat or drink on his own, but doctors have been unable to diagnose the reason why.
Rhys Leyland, from Wigan, is fed through feeding tubes to stay alive and has spent the majority of his life being ferried in and out of hospital.
His mum, Danielle Owens, 23, is worried about whether his condition will worsen as he gets older, but she said nothing seems to bother Rhys.
She told Wigan Today: "He has had 13 operations. We are always going back and forwards to Alder Hey Children’s Hospital in Liverpool.
"We have had a lot of problems sorting him out and it puts a real strain on the family. "
Owens, who is Rhys' full-time carer, and Rhys' dad Kyle Leyland noticed their son had stopped putting on weight when he was six months old, so took him to see a doctor.
Rhys began to be fed through feeding tubes, but the root of his illness was never found.
Rhys' parents were told he was born without key signals in his brain that tell his body how to digest food. He was given a pump he can fill up himself which allows food to enter his body through two tubes - one in his bowels and the other in his stomach.
"He is so clever for a three-year-old - when his pump beeps he tells me and he knows how to fill it up himself," said Owens.
Rhys is now a healthy weight for a three-year-old but Owens is worried nothing is being done to find out what's wrong with him.
She said Rhys is the only child in the UK with this type of feeding tube and she has growing concerns over it leaking when he is feeding.
She added: "The hospital doesn’t always return our calls and when we take him in for check ups they just give us dressings and tell us the tubes leak because he is such an active child.
"He is just a normal three-year-old and it is really starting to affect his life."
Owens said the medical focus has been too much on managing Rhys' condition rather than finding the cause.
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Rhys attends nursery but rarely goes for the whole day because of his illness, which means Owens always has to be on hand.
This has brought on growing concerns for the mother about when he attends school and how much it will affect him.
A spokesman for Alder Hey Children’s NHS Foundation Trust told Wigan Today they are unable to comment on individual patients.
He said: "Alder Hey has a dedicated complaints service for parents and carers to raise concerns.
"We always aim to maintain the highest standards of care across our hospital and we take all complaints from parents and families extremely seriously."
