Family bid to send Ben Green on one last holiday of a lifetime
WITH his cheeky smile and standing happily beside his mum, Ben Green could be any normal fun-loving teenager.
But heart-breakingly, the 16-year-old boy from Cheltenham has a severe form of cystic fibrosis and has been told he will be lucky to live past the age of 19.
He has use of less than 40 per cent of his lungs, weighs a meagre five stone and cannot go outside for long periods for fear of picking up infections.
He is only able to stay alive by taking a stomach-churning concoction of tablets every day.
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Parents Jaime and Phil Green are saving to send him on one last memorable holiday to Orlando, Florida, so that he can visit the Disney studios.
The Echo has launched a campaign, Send Ben to Orlando, to urge readers to help make his dream come true.
Doctors say the next few months will be his only chance – as he will be too weak to fly when his condition deteriorates further.
But the brave fighter, who lives in St Mark's and still attends classes at Bournside School when his health allows, is not looking for sympathy. He said: "I'm not going to lie – it's pretty rubbish having my condition. But I don't want to sit around feeling sorry for myself.
"The doctors have said I will be lucky to live past 19 or 20. But you never know – that could change.
"There might be new medicines in future and I might get longer than that.
"If I die, I die. There's nothing I can do about it.
"I get angry sometimes because I can't do the things other kids my age can – like play sports and run around.
"But there are plenty of things I can still do and, as long as I am here, I want to enjoy each day." Ben was diagnosed with the debilitating genetic condition when he was just two weeks old.
It means his lungs and digestive system get clogged with mucus, making it hard to breathe and digest food.
He also suffers from associated problems which include diabetes and liver disease.
He often has to spend weeks on end at Frenchay Hospital in Bristol where – among other procedures – he has to go on a drip to get vital nutrients on board.
But despite everything, his spirit remains strong.
He is an avid supporter of Chelsea Football Club, loves the street artist Banksy and has watched all the Harry Potter films.
It his dream to go to Orlando – but his family needs funding to turn that into a reality.
"I would love to go," he added. "It would be amazing to go to Harry Potter World, drink pumpkin juice and maybe even go on some of the rides.
"I just want to have some fun.
"I'd enjoy being in a place where people don't know how ill I am so they treat me the same as everyone else."
Ben's parents, who have eight children together, are dedicated to looking after him and provide round-the-clock care.
It often means getting up in the middle of the night if Ben wakes up, struggling to breathe.
Jaime, 35, said: "It would mean the world to Ben if we could send him to Orlando.
"He has deteriorated a lot in the last year and if he is going to go on a plane, we know it has to be soon as he will never get that chance again. "It's so sad when I think of everything that has happened to him and we know he doesn't have much time.
"But despite everything he is such a positive character.
"He is so outgoing and cheeky. He has got an amazing attitude.
"It would just be nice for something to go his way for a change."
Ben's parents estimate the trip will cost them £3,000 including flights, hotels and tickets to Disney studios.
Anyone willing to make a donation can drop a cheque marked Send Ben on Holiday at the family's home at 41 Griffiths Avenue, Cheltenham. Alternatively email email@example.com.