The parents of a Leyland schoolboy have told of their agonising decision for their son to have a double lung transplant.
Eight-year-old Jack Johnstone suffers from cystic fibrosis, which means he can only play with his friends for a matter of minutes before he gets out of breath.
“He’s a lovely little lad. He just gets on with it as much as he can. He’s so brave.”Dad Kevin Johnstone
Tragically, he only has around two or three years left to live, but his parents hope that if he’s successful in getting a transplant, it will add another four or five years to his young life.
Kevin and Tina discovered their little boy had cystic fibrosis, a genetic condition where the lungs and digestive system become clogged with thick sticky mucus, when he was eight months old, and were told that if it had been diagnosed any later, Jack would only have had six months left.
“Normally they do a heel prick test when babies are born,” Kevin said. “But we went straight home and it was only a few months later when he started to get really ill.
“He was vomiting and lost a lot of weight, and nobody could figure out what it was.
“We were referred to the Royal Brompton Hospital in Chelsea and that’s when we were told what the problem was.”
The family, including Jack’s younger sister Isobelle, seven, moved to Lancashire around five years ago, and Jack started attending Farington Primary School.
Kevin said: “On the outside Jack’s a normal little boy, but his lungs are severely damaged.
“He’s a lovely little lad. He just gets on with it as much as he can. He’s so brave.
“Now, we’ve made the decision for him to have a double lung transplant.
“It might mean his quality of life deteriorates - he’s likely to become deaf - but it will mean he can run around with his friends.
“At the moment he doesn’t play football or go out on his bike because he finds it too hard.
“He tries but he gets disheartened, so it’s the physiological effects it’s having on him as well as the physical side of things.
“We spent weeks and weeks processing the information and trying to make a decision, and in the end, we felt that we didn’t really have an option - we have to go for it.”
He added: “Jack can’t process that information. All he knows is that he likes getting time off school, which is a typical response for someone his age.
“He does really enjoy school, but he gets lethargic and sometimes disorientated in lessons.
“He’s very bright, he just isn’t there that often because he’s admitted to hospital every 10 weeks for three weeks at a time, to get intervention medication.
“School is more of a sociable experience for Jack - he more than likely won’t be here for his GCSEs.”
The foursome, who live in Hoghton, also spend a lot of time at the Ronald McDonald House in Manchester, which is set up for families to get respite from hospital.
And young Jack got his school on board to support the charity recently, with a fundraising disco.
Kevin said: “The Ronald McDonald House is like a hotel, and it means we don’t have to sleep on the ward.
“We take Isobelle and we have meals as a family, and it means Jack can have time away from the hospital as well.
“We’ve previously done fundraising for the Cystic Fibrosis Trust, but we chose the Ronald McDonald House this time so that other families can benefit from the facilities.”
The school council at Farington Primary School, which is made up of 12 pupils from all of the classes and lead by deputy head Jackie Roby, helped organise the disco and a mask competition.
Sweets, cakes and a fencing prize were also donated, and the school managed to raise £475 for the charity which will pay for two weeks’ accommodation for families whose children are in hospital.
Jack’s headteacher, Joanne Ramsbottom, said: “We are delighted with the fantastic efforts of the school council, which has worked so hard to raise such a fantastic amount of money for charity.”