Victory for a woman who fought MS and the law

A carefree life touched by the love of a Cuban violinist changed forever 15 years ago

Andy McSmith
Friday 31 July 2009 00:00 BST

It is 15 years since Debbie Purdy was struck down by multiple sclerosis. She was only 31 when she learnt she had a chronic form of the neurological disease, which would only worsen as the years passed.

It was a particularly cruel fate for someone who loved activity and travel. She was involved in protests against Thatcherism during her student days at Birmingham University, but dropped out when she was 20 because she wanted to see the world.

She found jobs in Norway – where she went to work on skis – in Tokyo and Singapore but returned to Britain in 1991 when her mother was ill. Both her parents died in quick succession. In 1994, she was back in Singapore, working as a freelance music journalist, when she covered a club gig by a Latin jazz band and began a romance with its Cuban violinist, Omar Puente.

That year, the shadow fell over her life. She had noticed that if she walked for a couple of hours, or went dancing, her legs began to feel wobbly and her body generally did not seem to react to exercise in the normal way.

At first, her doctor assured her she need not worry but the problem persisted, so she went for a brain scan, thinking she might be facing a tumour operation, and that in a few months she would be fully recovered. The technicians told Mrs Purdy the scan might take 50 minutes but it took only three. That was when she knew something was wrong. She was shocked when told she had a permanent, degenerative form of multiple sclerosis, which would mean her condition could only get steadily worse.

For 48 hours, she could barely speak, but then she pulled herself together and tried to resume her adventurous life. She was still fit enough to go white-water rafting or parachute jumping and could go abroad, find work there, and support herself with no help from anyone. She kept travelling to South-East Asia to see Mr Puente and visit friends, but encountered ominous signs that things were getting worse.

In 1996, she and Mr Puente went scuba-diving. As they walked on the beach, he saw bloody footprints and nearly fainted. Her feet were cut by the shingle but she had not felt it. Their relationship became closer, because she did the negotiating for his band, and he took care of her. They settled in Bradford in 1998, married and tried for a child. She miscarried, and after four more attempts they gave up.

By 2001, she was walking with sticks, had trouble keeping upright and foresaw she would soon be in a wheelchair. That year she heard about Diane Pretty, the terminally ill motor neurone disease sufferer who had gone to the European Court of Human Rights, hoping for a ruling that her husband, Brian, would be allowed to help her die without risking prosecution. Ms Pretty lost her last legal battle in April 2002, and died unassisted. The case led Mrs Purdy to join the Voluntary Euthanasia Society, She agreed to be pictured in one of its advertisements in 2005 – in a wheelchair but smiling cheerfully – to dispel the idea that terminally ill people were incapable of enjoying life.

She also made provisional arrangements to end her life at the Dignitas clinic in Switzerland. She wanted her husband to be with her, and he wanted to go, even at the risk of a 14-year sentence. In practice, British officials do not prosecute in such cases, but the risk of a court date was always there. "I do not want Omar or any other person dear to me to be made a criminal for what I see as an act of love and humanity," Mrs Purdy declared. "I will go overseas to die, alone and unaided, while I still can, if that is the only way I can be in control of my death and protect my husband. But it should not have to be this way."

In June 2008, she made a breakthrough when two High Court judges granted her a judicial review after the Director of Public Prosecutions, Sir Ken Macdonald, refused to say whether Mr Puente would face prosecution if he helped his wife at all on her journey to Switzerland. The case went to the High Court in October, where two judges offered her great sympathy but no comfort. They said it was for Parliament to change the law, but until they did, the courts could not promise Mr Puente immunity. In February, Mrs Purdy appealed, but the judges told her: "Not withstanding our sympathy for the dreadful predicament in which Mrs Purdy and Mr Puente find themselves, this appeal must be dismissed."

Yesterday's appeal to the law lords was her last chance. If it had gone against her, she might have set off for Switzerland alone. Instead, she will die with her husband beside her, knowing he is not exposed to the risk of arrest.

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