A Connemara MND sufferer has accused the Health Services Executive of denying him the right to choose to undergo an operation that will extend his life and has set up the Andrew Lydon Trust to help raise funds for the procedure and extensive aftercare that will be needed.
Married father of two, Andrew Lydon from Bealdangan, was diagnosed with MND (Motor Neurone Disease ) three years ago, with the result that he is now in a motorised wheelchair and relies on a device called a NIPPY, a non-invasive positive pressure ventilation machine, to help him breathe. Fighting for his right to choose his care and to spend as much time with his young family as possible, Andrew is calling on the HSE to allow him to have a tracheostomy performed which will help extend his life for a few more years. However, the HSE has not agreed to him having the operation in Ireland.
Sinn Féin Senator Trevor Ó Clochartaigh is this week calling on the Health Minister Leo Varadkar to help keep Andrew alive and intervene with the HSE to see what options are available.
Speaking to the Advertiser, the Galway senator said: “He wants to undergo the operation, which is relatively simple, however the aftercare involved is very expensive as it would need 24/7 nursing support. He is fighting for 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 is 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.
“The minister and the HSE must do all in their power to help this young father have the best quality of care, for him to extend his chances of seeing his family grow up and not use financial concerns as the barrier to that happening.”
Andrew (45 ) was helped by his wife Sally and children Seosamh (17 ) and Molly (12 ) to take part in the Ice Bucket Challenge, an extremely popular social media campaign which has helped raised awarness and funds of more than €1 million for IMNDA (Irish Motor Neurone Disease Association ).
The website www.andrewlydontrust.com has been set up to help raise the funds needed for the disease and to raise awareness of MND. Andrew, who once worked as a computer programmer in a local internet company, describes how “for the past few years MND has been slowly crippling me and eventually it will take my life”.
“The good news is that there is an operation which could extend my life significantly. Maybe even long enough to see my young family grow up. The bad news is the HSE here in Ireland will not agree to the operation. They don’t want to spend the money on the care I would need as my condition progresses. I’ve been told that this operation is only available in Ireland to the independently wealthy. So a trust fund has been set up in my name. The goal is to raise enough money so that the HSE will allow the procedure,” said Andrew, adding that at some point the NIPPY mask will no longer help him breath and invasive inventilation will be the only course of action.
“Stephen Hawkin got his operation in the eighties. It saved his life. Invasive ventilation isn’t for everyone. Less than 10 per cent of patients would choose it if it was available. That’s only five or six people per year. Many would consider it a fate worse than death. It is a very personal choice. But every year there are five or six of us who are denied that choice by the HSE. I consider it a violation of my right to life. I believe, as a citizen of the State, the State has a duty to protect my life. The trouble is that five or six people can’t shout loud enough to worry the State and with our NIPPY masks on we can hardly be heard at all.”
The HSE was asked for a comment on the matter but no reply was recieved.
For more information and to donate go to www.andrewlydontrust.com or follow on Facebook.