Inspirational Plymouth charity campaigner dies, aged 21
AN INSPIRATIONAL young charity campaigner who fought a crippling condition for more than 20 years has died.
Twenty-one-year-old Jon Paul Oxley, who had chronic cystic fibrosis, died on Thursday following a lung infection.
"Strong and cheerful" until the end, Jon Paul, from Chaddlewood, had been on a waiting list for a life-saving double lung transplant for 19 months.
Having won a string of community awards for his tireless charity work and sports achievements, Jon Paul's family said he "lived life to the full".
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Last week Jon Paul made the decision to stay at Derriford Hospital surrounded by his family and friends. He made the choice not to travel to the specialist Harefield Hospital transplant centre in Middlesex where he could have had his life prolonged by up to five days via a machine in the hope a transplant would come.
Over the years Jon Paul raised more than £12,000 for the Cystic Fibrosis Trust in the hope of helping other sufferers of the condition.
He was named a Herald Young Hero in 2010 and received the Marjorie Lynden Stannator Award for his charity work.
The devoted youngster also received a Lifetime Achievement accolade at the Pride of Plymouth awards in 2009.
And in spite of enduring a painful wait for a transplant, he remained busy to the end of his life organising one of his popular charity football matches between the city's doctors and nurses.
Jill Oxley, Jon Paul's mum, said: "When he got the lung infection we were told it might end like this. It was his decision - he just couldn't fight it any more. He remained strong and cheerful until the end. He didn't want to go to sleep. He kept fighting.
"He always put others before himself. He was a very inspirational young man and touched many people's hearts. He brought us love, happiness, enjoyment, fulfilment, generosity, energy - he was just Jon.
"He has certainly lived life to the full what with his football, fire engines and refereeing. And he loved going to school. He always wanted to be a teacher.
"My son was one of the best. He brought everything to our family – it was hard work with his condition but he was a character and loved life. It's just a total shock. He wasn't supposed to live past the age of one but he was a fighter and fought for more than 20 years. He fought right to the end. He just went to sleep peacefully and now he's free from pain.
"He's left a massive, massive hole in our lives. He was very special and always will be."
JON PAUL'S FAMILY IN ORGAN DONATION PLEA
JON Paul’s family have made a plea for more people to become organ donors following his death.
Jill Oxley, Jon Paul’s mum, said she would like to see a change in the law to an opt-out system, meaning that everyone would automatically be an organ donor unless they chose not to be.
Since being put on the waiting list for a life-saving double lung transplant in February 2011, Jon Paul had received five calls to say lungs had become available.
But each time he travelled by ambulance to the specialist Harefield Hospital transplant centre in Middlesex he was told the organs were not viable.
Mrs Oxley said: “The last phone call came about eight weeks ago. We got 14 miles outside the hospital before being called to say go home again as there had been a problem with the lungs. Jon Paul said to me that the sixth pair would be his time.
“It’s been like sleeping on a tinderbox since he was put on the transplant list. Just waiting for the phone to ring. I think he’d want people to know what we’ve been through to encourage others to sign up. We want to encourage more people to become organ donors – it doesn’t take much.”
Jon Paul had offered to donate his heart valves, the only part of his body suitable for donation due to his illness, but his family have since been told they cannot be used because of the medication he was taking.
Mrs Oxley said: “He wanted to help others even when he had passed away. I honestly thought he would get a transplant; we all did, but we were realistic too. Hearing other people’s stories gave us hope.
“It’s a shame it’s come to something like this to try and encourage people to donate and not take it with them. I’m making a plea to the people of Plymouth to register. I’m urging the government to make organ donation compulsory unless you actually opt out. Even if we save one person something good has come from Jon Paul’s life.”
Most of Jon Paul’s family have signed up to become organ donors since he was put on a waiting list.
Jonathan Wickett, Jon Paul’s uncle, said: “I think people find it hard to think about organ donation at a time of loss, but people need to think about how it can help someone else to live. It doesn’t just help one person – it could help many.
“If people had been through what we’d been through they would change their minds. Because everyone has such busy lives organ donation isn't at the forefront of their minds. But if someone is rushed into hospital needing an urgent blood transfusion they expect to be able to get it without any problems – its’ no different to giving an organ.”