Galway Sinn Féin Senator Trevor Ó Clochartaigh has appealed to Minister for Health Leo Varadkar to help extend the life expectancy of a Connemara man with motor neurone disease.
Andrew Lydon, a 44-year-old computer programmer and father of two teenagers, has already initiated his own campaign seeking support for the procedure known as a tracheostomy, which scientist Prof Stephen Hawking received in the 1980s.
Mr Lydon was diagnosed with motor neurone disease three years ago, and is using a “Nippy” or non-invasive positive pressure ventilation machine to breathe.
However, he says his Nippy, which he describes as a “jet fighter mask” serving as a “glorified vacuum cleaner”, may not sustain him indefinitely. He says he will require invasive ventilation if he is to go on living.
‘Can’t move a muscle’
He describes on his website how he “literally can’t move a muscle”, but “can still feel every touch and every itch”. “I can still feel the rain on my face, the sun on my back and the embrace of a loved one.”
The tracheostomy procedure involves inserting a tube into the throat when non-invasive ventilation is no longer working effectively.
While it does not stop the progress of the disease, it does allow the person to breathe mechanically with equipment, which has to be maintained professionally on a continuous basis.
It is understood that, as yet, the HSE has no clear policy on funding the 24-hour care required if the procedure is to be carried out electively.
Children
Mr Ó Clochartaigh said he was calling on Mr Varadkar to discuss Mr Lydon’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”.
“Andrew believes that by taking no decision the HSE are allowing him to die by default,” he said. “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.”
Mr Ó Clochartaigh added: “Andrew has started his own campaign now to raise the funds he needs to have this operation done and to go towards providing the support needed afterwards.”
The Department of Health said Mr Varadkar could not comment on individual cases, and the issue was one for the HSE.
