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I've lost everything(Daily Mail Via Thomson Dialog NewsEdge) ON THURSDAY Ryan Wilson will go to hospital to have the third and fourth fingers of his left hand amputated at the second knuckle. It will be a relief, he says, to get rid of them. They are blackened and shrivelled through blood poisoning, with the appearance of severe frostbite, and he does not dare get them damp because wet gangrene - unlike dry gangrene - spreads and he doesn't want to lose his whole hand. That has meant, at the age of 20, having to rely on his mother Marion Flanagan to wash him, much as she did when he was a baby. The tears he has shed at the sheer indignity of this have made him feel 'like a little child all over again', says Ryan, the worst injured of the six men who took part in the infamous 'Elephant Man' drug trials last March. After the operation he plans to bring his dead fingers home and put them in the freezer, along with the gangrenous ring finger of his right hand which he lost a couple of months ago and the ten toes amputated in July. This may sound macabre, but Ryan doesn't think so and his determination to hang on to every last part of his body - in whatever form - reveals how traumatic the loss has been. 'When they amputated my toes the doctors asked "shall we throw them away?" and I said "No way". They were mine for 20 years and it was hard to see them go. I wanted to keep them, I suppose they remind me of the person I used to be and what I've lost. I couldn't just throw them away.' Ryan, a trainee plumber, almost died after suffering a severe reaction during clinical trials of TGN1421, a drug its German makers TeGenero hoped would fight rheumatoid arthritis, leukemia and multiple sclerosis. The Elephant Man label came from the girlfriend of another victim, describing how his head was so swollen and deformed. The trials at a special unit in Northwick Park Hospital, North London, went disastrously wrong within minutes of the volunteers being injected with the drug. All Ryan remembers is the terrible pain which erupted in his body before everything went black and he fell unconscious. It was the first time he had volunteered for a drug trial and he wanted the GBP2,000 fee for driving lessons. Today, how he regrets not listening to his father Billy, who phoned him at the hospital the night before the trials began to say: 'Don't do it, just walk out now. Your body is more important, forget about the money.' As it was, Ryan paid a terrible price for what he thought would be a virtually risk-free way of making a bit of extra cash. His body swelled to three times its normal size and he was in a medicallyinduced coma for two and a half weeks. He spent 147 days in Northwick Park Hospital. He suffered multiorgan failure, pneumonia and septicaemia which caused his fingers and toes to turn gangrenous. He also lost four stone in weight. There were so many tubes and wires attached to his body that there was no space left for his family to touch. He remembers, despite being in a coma, being able to hear doctors saying to his relatives: 'He is so critically ill, we don't think he'll make it.' He also heard another of the seriously ill victims, Mohamed Abdelhady, tell doctors: 'Don't worry about melook after him, he's dying.' Ryan's mother Marion, 50, recalls a doctor crying as he told her; 'He's only 20 and I just don't know how to save him. He's slipping away from us and all we can do is watch and wait.' Against all the odds Ryan survived. When he came round, stunned doctors told him 'You shouldn't be here. You should be dead.' Ryan returned home in August to the Islington flat he shares with his Irish mother, who is separated from his Scottish father Billy Wilson, a carpenter and joiner. But he is not out of the woods yet - and may never be. Just before he left hospital doctors discovered a non-malignant cyst on his brain - which may have been caused by the drug trials - and consultants remain deeply concerned about his compromised immune system which leaves him vulnerable to incurable diseases such as multiple sclerosis and cancer. 'As far as I know I could drop dead in 12 months from an auto-immune disease but I have faced death once before and if I have to face it again, then I will,' says Ryan. 'I've had a good life. What has happened has made me realise just how precious life is, no matter how short it might be. 'I have a very stubborn mentality. In my book you either march or give up and I choose to march. But there is no escaping that this has been the worst year of my life. Before this I thought life was something to be enjoyed, now life is simply something to get on with. 'But I'm glad I survived and I hope that things will get easier. Every day I think "I shouldn't be here. I should be dead" so God must have wanted that to happen for a reason. I've just got to make the most of it. 'Before, I was a typical young lad who loved to go out with his mates. I'd joke about wanting to kill myself when things went wrong, but I wouldn't dream of saying that now because I know how close I came to death. We are all living on borrowed time.' Despite his terrible injuries, the first thing you notice about Ryan Wilson is how handsome and youthful he is. Tall and broad-shouldered with an open face, blue eyes, wide smile and engaging, positive personality. It is easy at first to overlook his disability, but there is really no escaping it. He cannot walk without crutches, and even then only for five minutes before searing pain in his feet forces him to retreat to his wheelchair. But he is determined to walk unaided and attends twice-weekly physiotherapy sessions at Peck Water rehabilitation centre in Camden. His ambition is to be able to wear his beloved Nike Airmax trainers again, not the ugly special shoes which he says resemble 'deep sea divers' boots'. He has no sensation in his remaining fingertips but everywhere else, especially his feet, is wracked with pain. Even so, he refused to take the morphine he has been prescribed because of its addictive qualities. 'My hands are so weak I can barely unscrew the cap of a bottle of Lucozade,' he says. 'The doctors said the strength would eventually come back but it hasn't so far. I never really thought about just how hard it is for disabled people, but now I know I take my hat of to them. They have my utmost respect.' But while Ryan shows remarkable spirit, he has become increasingly self-conscious about the way he looks and always wears gloves. 'At first I couldn't go out on my own because I couldn't bear people looking at me, I became quite paranoid about it,' he says,' I still go out with my mates for a drink, but it is difficult. I can't walk to the bar. I walk like Lurch out of the Adams family and I don't want to look like an idiot. 'I'm not a vain man but thank God I didn't lose my face as well. I don't know what I would have done. But I do still get very upset, especially when I see my mates running or kicking a football around.' Ryan's self- consciousness was heightened by the collapse of his four-year relationship with Michelle Bayford, 20, the girl he met when he was studying plumbing at the City of Westminster College and she was a hairdresser working round the corner. It is when he talks about Michelle that his determinedly cheerful facade starts to crack. She visited him in hospital every day and they talked of getting married, But as the weeks of gruelling treatment passed the relationship buckled under the strain. 'I'll never forget the first time I saw Michelle,' he says. 'She was so beautiful and I kept asking her out, but she wouldn't give me her number. Then one day I said "If you don't give me your number I'll never chat you up again". 'I really thought she was the one, but it wasn't to be. She just couldn't deal with what had happened, but then neither could I. I was very insecure and worried she would no longer find me attractive and I started to push her away. 'When I first came out of the coma I just didn't want to live. I was so ill, every part of me was in pain, and I couldn't even talk because there was a machine breathing for me. I thought 'if this is what life is going to be like from now on I don't want it.' 'But then my mother and older brother William brought in cards and letters. I remember William sticking up photographs of my nieces Francesca, who is six, and five-year-old Chloe and that was a turning point. I thought "I'm going to live for them". I didn't want to die without seeing them again. 'It was so good to see Michelle again and she kept telling me that she loved me and at night I'd dream about dancing with her to the UB40 song Red Red Wine at our wedding,. But I told her "I'm not going to marry you until I'm better. I want to be able to walk you back down the aisle". That's what she wanted too. 'But as the weeks passed I could see her mentality changing. She became more and more distant and then one day - after a couple of months - she told me "I'm sorry we can't be together any more." 'In many ways I can't blame her. I was horrified when I looked at my blackened fingers and toes and I lost so much weight I looked like skin and bone. I couldn't even sit in a chair because my stomach muscles had wasted away. 'And the pain is impossible to describe. They had to wrap my feet in equipment called vacuum pump assisted closure. Foam was used to dress the wounds, then covered in a cling film substance and all the air and moisture sucked out because that helps the tissue heal. 'It had to be changed every three days for a month. They'd give me morphine, ibuprofen and laughing gas to try to take away the pain but it was excruciating. Imagine the pain of ripping a plaster off a wound and multiply that by five million. I cried like a little girl. 'At those times I was very depressed, but it takes two for a relationship to break up, so I don't blame Michelle. Part of me will always love her.' Initially, doctors planned to wait for Ryan's gangrenous fingers and toes to drop off, but it soon became clear his toes would have to be amputated to prevent the spread of disease. He is grateful to tissue viability nurse Sean Keogh, who told him in no uncertain terms what this would mean. 'At first the doctors were talking about my losing the odd toe, but about a month before surgery I asked Sean to tell me straight what to expect. 'He drew his finger across my foot at the exact spot where the surgeons eventually amputated. I was grateful for his honesty, because I finally knew exactly what I was dealing with.' After the wounds healed, Ryan started physiotherapy to help him start walking. He had come to terms with the loss of his toes, but was still unprepared for how much of a disability this would prove. 'The first time I tried to walk I just couldn't stand on my own,' he says. 'My balance had completely gone. You don't realise just how much you rely on your toes for balance. You have to relearn how to walk and it's incredibly painful. I started with a zimmer frame but now I'm on crutches and I hope I will be able to walk again unaided.' Before the drug trials Ryan planned to take over his uncle's plumbing business. Now he doesn't have a clue what he'll do when he's well enough to look beyond his recovery. He and Mohamed Abdelhady are represented by solicitor Ann Alexander, who is fighting for compensation for their injuries and future loss of earnings. TeGenero filed for insolvency in July - citing the 'unforeseen' results of the tests as the reason. The company had a GBP2million insurance policy, but lawyers have called that 'wholly inadequate'. The men are now taking legal action against Parexel, the U.S-based company that ran the trial. Ryan says: 'I had 45 years of work ahead of me, earning GBP100,000 a year, now I don't know if I am ever going to work again. 'I loved plumbing and I was good at it. But I'm left-handed and on Thursday they are amputating two fingers on that hand. 'Money doesn't really compensate for anything. I have never wished I died, every day is precious to me and I am getting on with it. But I would much rather have the old Ryan back than this new unimproved version.' Copyright 2006 Daily Mail. Source: Financial Times Information Limited - Europe Intelligence Wire. |