By Sarah Mac Donald - 28 November, 2018
RTÉ television is set to broadcast a documentary that follows Motor Neurone Disease campaigner Fr Tony Coote on his inspirational journey from Letterkenny to Ballydehob last summer to raise money for the degenerative MND.
Walking the Walk follows the charismatic Dublin parish priest from his diagnosis last March as he comes to terms with the condition’s dramatic impact and as he gathers together a group of supporters who undertake the 550 km walk from Co. Donegal to Co. Cork with him.
MND is an incurable neurological condition that progressively robs sufferers of their physical faculties.
When 54-year-old Fr Coote learned of his diagnosis he decided to raise awareness of MND and raise funds for sufferers. Around 150 Irish people are diagnosed each year with MND, but there are currently only three dedicated nurses looking after them, and they are funded entirely by charitable donations.
Consultant neurologist Professor Orla Hardiman of Trinity College Dublin revealed to him that there had been no significant advances in treatment of MND for 24 years because of a lack of research funding.
The documentary follows Fr Tony as he sets a fundraising target of €250,000 and invites people to join him on ‘Walk While You Can’ (www.wwyc.ie).
By the time the walk began in July, Fr Tony’s rapidly deteriorating condition meant that he had already lost much of the power in his legs and was dependent on a wheelchair.
He was warned that even in a wheelchair the exertion of the walk posed a serious danger to his health, but he went ahead anyway.
The documentary follows Fr Tony Coote’s journey through Donegal, Sligo, Mayo, Galway, Clare, Limerick and Cork. Along the way, we see how people join the walk, with communities the length of the country turning out to welcome and support him.
Despite becoming visibly more disabled as the journey progresses, he sticks to his determination “to show that the illness is not the person. The person has an illness. I’m still the same person.”
He discusses candidly how his diagnosis has affected his sense of vocation, his relationship with God and his determination to make the Church a place of inclusion and love.
By the end of journey, Fr Tony and his fellow pilgrims had raised over half a million euro – more than double his target.
There is now even hope of a breakthrough in the medical treatment of the condition.
Half of this money raised has been earmarked to fund healthcare services for the 400 sufferers of MND in Ireland.
The other half of the money will go towards a research project headed up by Professor Hardiman that will focus on testing brainwave and imaging patterns to better understand how the disease progresses and identify which drugs it responds best to.
“This money is vital. We are going to use the €250,000 to leverage further money to build a programme to understand brain activity and brainwave changes,” she explained. These clinical trials need to raise €8 million in Ireland and this will be part of a wider €40 million project across Europe.
“Motor Neurone disease is not an untreatable disease – it is an underfunded disease,” Professor Hardiman said.
She was part of Fr Tony’s team on the walk and the documentary shows their “sparring relationship” when they disagree over his wheelchair.
“I am not religious – I lost my faith a long time ago, but this man is living something he believes, and he is like a latter-day saint,” she said.
Roger Childs, Head of Religious Broadcasting at RTÉ and Executive Producer of the documentary Walking the Walk told CatholicIreland.net that the documentary, which is directed by Maurice O’Brien, is “deeply moving and surprisingly uplifting.
“This isn’t a medical documentary – this is a documentary about a priest going on a walk, but it is actually about what it means to be a human being.”
He added, “What we have in Tony is a fantastically charismatic person who can articulate faith in really difficult circumstances.”
Roger Childs paid tribute to the “refreshing clarity” of Fr Tony’s faith and sense of purpose.
“It is quite disarming because you don’t hear it very often. He says, I believe my life has a purpose; I believe there is something after this; I believe that there is a big picture and I believe there is a God who is supporting me through this.
“He explores his priesthood with candour, frankness and some black humour. You see the magical effect he has wherever he goes. He is a fantastic ambassador for priesthood.”
Walking the Walk (#WalkingTheWalk ) airs on RTÉ One at 10.15 p.m. on 6 December 2018.