Motor Neurone man left to die by default

A Connemara man who has Motor Neurone Disease claims the HSE is allowing him to die by default because he is not being granted access to surgery that would prolong his life.

Andrew Lydon is a 45 year old father of two from Baile na hAbhann now living in Tuairin, who was diagnosed with MND (also known as ALS) three years ago and who has asked for a tracheostomy to extend his life.

The HSE policy is not to provide MND patients with this procedure as it usually involves expensive full-time daily aftercare.

This week the family launched a campaign through the Andrew Lydon Trust to help fundraise for this treatment and aftercare and to highlight his and many others’ prediment.

This week too, Senator Trevor Ó Clochartaigh rowed behind the campaign and has pledged to ask Minister for Health, Leo Varadkar to intervene.

Sally Lydon, Andrew’s wife, said that the surgery was a relatively simple operation and that the expense was with the aftercare, which has been estimated at about €300,000 a year.

“To get this procedure, which would then require full-time care, you would need to be independently wealthy. Andrew has a discretionary medical card and we do have private health care but it is still beyond our reach.

“The decision to have the procedure is a personal one, not everyone wants who has ALS wants it, but Andrew wants to be around longer for our children, who are 17 and twelve.”

Senator Ó Clochartaigh said he believed there were only five or six people in Ireland who would be suitable or would opt for the operation but that HSE policy currently denied them the choice.

“Andrew believes that this is a violation of his rights, that as a citizen of the state, that the State has a duty to protect his life.

“I am calling on Minister Varadkar to discuss Andrew’s case with the HSE to see what can be done to assist him and to extend his life expectancy, so he can see his children grow up and spend more time with them. Andrew believes that by taking no decision the HSE are allowing him to die by default.

“It is ironic that the state recently expended huge resources in fighting court cases on the right to life and that now we have a man fighting to extend his and they are not giving him their full support,” said the Senator.

Andrew worked as a computer programmer in a local internet company when he noticed the little finger of his left hand was sticking out from his other fingers and he couldn’t move it back.

He initially thought it was Repetitive Strain Injury but a few months later the muscle between his forefinger and thumb began to weaken and he lost his pinch power.

“What followed was nine months of MRIs, EEGs, blood tests and endless other tests until finally I was sitting in front of a specialist in Dublin being told I had a terminal disease. The news was devastating. How could I be dying? I didn’t even feel sick!” writes Andrew on his website.

He did return to work but by the summer of 2013 found himself in a wheelchair and these days he uses a NIPPY (a Non-Invasive Positive Pressure Ventilation machine) to help him breathe.

He will eventually require an invasive ventilation, a procedure that saved scientist, Stephen Hawking in the Eighties and which is still prolonging his life.

The Andrew Lydon Trust is currently open for donations and any monies not used by Andrew will go towards the Irish Motor Neurone Disease Association.