A special Wexford boy is in need of a special cure for an extremely rare and debilitating illness.

Aged two and a half, Johnny Murphy is cared for by his mother, Sabrina, at their Oakpark, Ballymurn home. Johnny will travel with his mother to Great Ormond Street Hospital in London in five weeks for further diagnosis of his silent aspiration and motility digestion illnesses.

“We have no diagnosis at the moment,” Sabrina told The Echo.

“We have a list of what’s wrong with him. He can’t eat anything because it goes into his lungs; basically we can’t eat without vomiting.”

She said Johnny requires 24/7 care, adding that she had to give up her hairdressing job to care for him.

By way of assistance in caring for Johnny, Sabrina only gets six hours help per week from the Jack & Jill Foundation.

Johnny has been ill from birth, but a diagnosis wasn’t reached until he was around three-months-old.

“He nearly died at home; Crumlin did a test after two weeks and figured out that everything he was eating was going straight into his lungs.”

Johnny has to be fed into his bowel through a tube for 18 hours a day.

He cannot mix with other children in case his tube gets damaged but enjoys the company of his older brother Jason (4) and sister Lily (6).

“The kids are careful around him at home, but if the tube gets entangled he would have to go back to hospital and the procedure has to be done again. It’s horrific and he has to remain awake for it.”

“He carries a trolley around and pulls it with him. It’s hard on him because he can’t get involved in playing and going to playschool like other children…school will be an issue too.”

Sabrina said a doctor in London has told her and her husband, John, that Johnny’s stomach simply isn’t working.

The HSE will cover some aspects of the trip but not everything.

Sabrina said: “I have to give him a chance. At the end of the day I have to be able to tell him I did everything (I could) for him. I have to be able to look back and say I tried everything.

“We have to wait to see the results of the tests as there is no diagnosis. Depending on the tests if there is anything I can do, even if we could get the tube back through his stomach, (for seven hours a day), that would be an improvement.”

She said most children with silent aspiration and motility digestion illnesses have suffered a stroke.

“He’s a medical mystery, in Ireland they can’t get to the end of it.”