Starvation is legal euthanasia 2
"Instead of providing support and resources for terminally ill patients, doctors are being guided by the pressure to free-up beds."
And Leslie's stand has won wide support.
The Disability Rights Commission, the British Medical Association, the Royal College of Nursing and the Resuscitation Council are all now in discussion with the GMC about improvements to their guidelines.
A spokesman for the DRC said: "Our recommendations include a removal of the `quality of life' aspects. We think it is inappropriate for medical, staff to make decisions on issues which cannot be objectively assessed.
"We also feel medical staff often have a narrow. view of disabled people's quality of life."
The Government has attempted to clarify the legal confusion over `right to life' cases by planning the introduction of living wills, but these too have come under heavy fire from prolife campaigners.
"I've been portrayed as tragically brave," said Leslie in his slow quiet voice.
"I'm not brave, and I'm definitely not tragic.
But I do believe these guidelines make a mockery of the sanctity of human life."
But to Leslie, the issues at stake are even simpler."I
am a human being," said Leslie,
whose Catholic upbringing is reflected) in his pro-life stance,
"and I should be asked what I want.
"If I were able-bodied I would be consulted as a matter of course. But because I am disabled, other people are making life and death decisions about me based on what they believe about my quality of life.
"That is legalised euthanasia, and it is wrong.
"No-one, not even my family, can know what quality of life I enjoy except me, and I should be asked."
And he is angry about the whole idea. of a "one size fits all" approach to legislation.
"Take my wheelchair," he said. "It's bog-standard NHS issue. but I happen to be rather tall, so I have no choice but to sit in it with my legs hunched up.
"So I put up with it because no-one asks if it's okay and it's the only way I have of getting around."
Leslie's case is echoed in a judicial review which is to take place into the treatment of an 11-year-old who has been identified only as "Nadia".
In 2002 the severely disabled youngster was admitted to the Royal London Hospital after complaining of breathing difficulties.
By Geraldine Durrant
When her breathing stopped, consultants initially refused to put her on a ventilator saying she had no chance of recovery.
However when nurses resuscitated the child, the decision not to ventilate was rescinded, and after a three month stay in hospital Nadia returned home.
Leslie has been hailed as a hero for his stand, but he says he is uncomfortable with the attention, and simply wants to get on with his life.
He has many friends, is a cofounder of the Disablement Information and Support Centre in Lancaster, and recently became godfather to his third godchild, Caitlin.
"I probably won't be around to see Caitlin grow up," he said; "but part of the reason I took on' this case was because I want her to understand the principles I am fighting for."
Leslie is also motivated by the plight of his younger brother Bob, who at 43 suffers from the same hereditary condition.
His symptoms are not yet as advanced as Leslie's own, but a change in the GMC's-guidelines will help assure his future too.
"I'm enjoying life so much: that I don't want it cut short for any reason whatsoever.
"This is not about consent; it is about stopping society taking the easy way out.