Mystery condition means boy, 3, can’t eat or drink

Rhys who has a mysterious illness that means he can't eat or drink
Rhys who has a mysterious illness that means he can't eat or drink

A BRAVE Wigan boy is battling a mystery condition that means he cannot eat or drink on his own.

Three-year-old Rhys Leyland has spent most of his life in and out of hospital and relies on two feeding tubes to give him the nutrition he needs but no one seem to know what is wrong with him.

And despite everything he has been through the cheeky youngster does not let his illness stand in his way according to mum Danielle Owens.

“Rhys has spent most of his life in and out of hospital. He has had 13 operations. We are always going back and forwards to Alder Hey Children’s Hospital in Liverpool,” said Danielle, aged 23.

“He has two feeding tubes, one in his bowels and one in his stomach. We have had a lot of problems sorting him out and it puts a real strain on the family.

“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.

“It doesn’t seem to bother him at all - he just gets on with it and plays with his friends.”

Danielle and Rhys’s dad Kyle Leyland, of Worsley Mesnes, noticed that he had stopped putting on weight when he was about six months old and took him to see a doctor.

Rhys is now back to a healthy weight for his age but the couple feel that little is being done beyond managing Rhys’s condition, and fear that as he gets older, it will start to affect him more and more.

Danielle added: “He is the only child in the UK that has this type of feeding tube and they told me when he got it that it wouldn’t leak but it does.

“The hospital doesn’t 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.

“He can’t eat or drink and has lots of problems with his bowels but they don’t know what is wrong with him.

“All they have said is they think there might be something wrong with the signals in his brain but the focus has been on managing his condition rather than finding out what is causing it.

“He goes to nursery but he rarely goes for the whole day because he will fall ill.

“I drop him off and return home but I rarely go out anywhere because I know I will get a call.”

For Danielle, who is Rhys’s full time carer, and Kyle, a plasterer, life can be very difficult and they worry that as he gets older it will become more of a struggle for Rhys.

“You can’t tell there is anything wrong to look at him but everyone at his nursery knows him,” she said.

“When he starts school it will be hard for him because people there won’t know and I am worried that they might pull his feeding tubes or tease him for them.”

In response to Danielle’s concerns about Rhys’s treatment, a spokesman for Alder Hey Children’s NHS Foundation Trust said that 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.”