Saturday 27 December 2014

'She never gives up, Nicky's a fighter and she's not stopping'

Published 16/12/2012 | 05:00

Motor Neurone Disease may have taken Nicky McFadden's speech but her actions speak for her, writes Donal Lynch

The last time I saw Nicky McFadden her speech had slowed only slightly, almost imperceptibly in fact. That was a grey June afternoon in Leinster House, just a few days after she had been diagnosed with Motor Neurone Disease (MND). The Longford-Westmeath TD spoke calmly and with great determination then, telling me of the problems she'd already seen off in her life and of how she would overcome this obstacle, too. It was almost difficult to believe she really was ill.

When we see each other again – on a recent night at the Shelbourne hotel in Dublin – that steely character is still in evidence. She smiles hesitantly at me, but as I begin to talk she waves her hand in front of her throat – indicating to me that this time she can't speak. In the intervening months the illness has taken its relentless, stealthy course.

As she walks through the function room, where celebrities and politicians have gathered for the Oireachtas Christmas Charity Fundraiser, she makes the same gesture to others who try to engage her.

Words seem a little redundant anyway when her presence here – ready to take to the catwalk later – says it all. She epitomises the triumph of the human spirit.

As far as possible, Nicky has not allowed the disease to slow her down. She still travels to Dublin three times a week for Dail business. She communicates now mainly by using a special app on her phone, which can read out things she writes down. Her two sisters – Gabrielle, a county councillor in Athlone; and Aine, a public health nurse – have been her right- hand women in terms of communicating and continuing her work.

"Her voice is almost completely gone," Gabrielle tells me. "But apart from that, thank God, we have had no other ill-effects yet. Her driving is perfect. Cognitively she's fine. She's able to walk fine. She's even able to strut her stuff on the catwalk tonight. She hasn't let it beat her in any way, shape or form. She's not going around being maudlin, sad or upset – and neither are we. But privately, of course, we are devastated."

Gabrielle and Aine were with Nicky on the day she was diagnosed at Professor Orla Hardiman's clinic at Beaumont Hospital in Dublin.

"It was May 31 – I will never forget that date," Gabrielle tells me. "Although we at the back of our minds knew it wasn't something small, we still had hope that things would work out. Nicky was relieved with the diagnosis in a funny kind of way. People were talking about her behind her back – that she was drinking and that kind of stuff. From that point of view it was a relief, but obviously we were all devastated."

Nicky's son, Eoin, was in the middle of doing nautical science exams so they waited before telling him and her daughter Caren, who has since moved home to Athlone with her partner and child to be nearer to her mother.

"They're great kids and they're coping with this as well as could be expected. They're practical and down to earth," Gabrielle tells me. "Also we have an aunt, Kay, who has always been a second mother to all three of us and was instrumental in getting Nicky elected, she is a huge support to Nicky, Caren and Eoin."

After getting the diagnosis, Nicky told me she would never go back to Beaumont – the memory of that day was just too painful. But Gabrielle tells me Nicky has come around. "She is going back. Orla said it to her tonight and she said 'yes' – she will go back. I don't know if she said that just to get rid of her, but I think she means it."

Hardiman has a persuasive way about her. Warm, witty and eloquent, she is both one of the world's leading experts on MND and a tireless advocate for neurological patients in Ireland. In her capacity as a research scientist, she is working with a team in Trinity College to develop a new drug that works in mice. It is this work that Nicky and other patients are placing their faith in.

"Nicky's thing is research," Gabrielle tells me. "Nicky is 100 per cent adamant that as much money as possible can go to Prof Hardiman and her team for research. Even if you have a drug that looks like it's working, to license and fully test that drug is so expensive. So funding is also the thing. We're hoping people will donate to the cause and perhaps someone out there with deep pockets can help us."

The prognosis for MND patients is bleak. As the name suggests, the illness affects the motor neurones – the nerves that control voluntary muscle activity. It is progressive, degenerative and fatal. As it progresses, patients may have trouble with breathing and swallowing and many are left unable to walk. There is no cure.

Doctors don't yet know what causes the illness, although Ireland has been at the forefront of international research. Five years ago, Prof Hardiman and colleague Prof Andrew Green discovered a mutated gene which produced a protein called angiogenin. Earlier this year, researchers at the Royal College of Surgeons in Dublin discovered the role of this protein in MND and how it protects motor neurones from damage.

Prof Jochen Prehn, who led the research team, described the finding as "completely Irish" given that all of the research had taken place here.

Hardiman has said that she is confident that we will see a cure in her lifetime.

She says: "If you look at all of the work that is under way both in Ireland and internationally, the huge breakthroughs that have happened in the past two to three years, and the calibre of young people who are now committing their careers to finding new treatments, you can't but be optimistic about the future. There are lots of new drugs being tested for MND. If even one of these shows an effect (and we are very hopeful), this will be a major advance."

But will that come in enough time for Nicky McFadden? Some might wonder why she doesn't pack it all in and enjoy her life away from the pressures of Leinster House.

"Our father [Brendan McFadden, former Westmeath Co Councillor] was nearly 30 years in politics, so we grew up with it – it's second nature to her," Gabrielle tells me.

"Packing it in wouldn't be her. She reared her children and did a wonderful job. She ran for Athlone town council and got herself elected as a young female candidate. She wanted to become a TD and wasn't successful, so she ran for the Senate.

"She wasn't successful, so she ran again and won with a record-breaking vote. She never gives up. She's a fighter and she's not stopping. She feels she was elected and she doesn't want to let people down."

And she doesn't: the fundraiser, which Nicky helped organise, was a huge success with the likes of Brent Pope, Pat Kenny, Alan Brogan and Aoife Cogan supporting MND research.

TDs and senators strutted their stuff alongside models – Senator Catherine Noone joked that the difference was that "the politicians might be a bit fatter but they can smile because they're not hungry" (except for power, presumably).

And – while highlights of the fashion show included Eamonn Coughlan posing as James Bond, TD Derek Keating showering the runway with red and blue confetti (to represent the coalition colours) and a black male model bounding from the stage to give a hug to ethicist Gina Menzies – the show was undoubtedly stolen by the Longford-Westmeath TD. To a thunderous standing ovation she walked down the runway with Ceann Comhairle Sean Barrett on her arm.

As she waved to the crowd, for a brief moment the hardships of the last year were forgotten. The 'thousand day illness' could wait; this night was for Nicky.

Donations for MND research can be made to: Research Motor Neurone c/o Section of Neurology, School of Medicine, Room 5.43, Biomedical Sciences Building, Trinity College Dublin, Pearse Street, Dublin 2.

For further information please contact Grace Lavelle at 086- 8212659 or ResearchMND@tcd.ie

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