Popular Kilkenny man facing battle with Motor Neurone Disease as community rallies around

Benny McDonagh is 56-years-old and lives in Owning in South Kilkenny with his wife Kiri, and has three children - Dubhaltach, Amber and Caleb.

In May 2024, just as Benny was primed to contest the local elections in the Piltown Municipal District, his life and the lives of those in his family were turned upside down when he was diagnosed with this Motor Neurone Disease.

And while the family have a long, troublesome road ahead, their journey to a diagnosis was equally torturous.

Benny’s symptoms first presented in March 2021. The next 18 months were spent with repeat visits to the GP as new symptoms presented each time not been taken seriously and with request for MRIs and further testing dismissed.

But his symptoms continued to escalate, and the family’s worry continued to mount so Benny changed to a new GP who finally listened. That change resulted in Benny being referred to hospital but astoundingly, despite his symptoms he was also given a clean bill of health there and sent home.

Out of sheer desperation, Benny’s wife Kiri drove to Aut Even Hospital one Monday in April 2024 and begged the receptionist for an appointment with a neurologist. Thankfully, Benny was sitting in front of a consultant the following Thursday.

There is no test for Motor Neurone disease, so Benny’s diagnosis came by process of elimination and lots of tests including bloods, CT scans, MRIs to name a few.

As they do not have private health insurance and the wait lists on the public system are so long, they had no choice but to pay for all the tests themselves which has cost the family thousands.

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While Benny and his family are grateful to finally have a full diagnosis of Bulbar Onset Motor Neurone Disease the road ahead is full of uncertainty and heartache.

Benny’s ability to talk has deteriorated significantly to the point where he now communicates largely through a whiteboard and marker.

Anyone that knows Benny, knows how much he loves to talk so it is a major blow to him now that he finds talking a very hard thing to do.

Also, Benny’s swallow and breathing are both becoming weaker which is so difficult for Benny to come to terms with.

He is now too feeling the effects in his legs and back. Due to his weakened swallow Benny is largely fed through a peg tube.

The simple things that we take for granted like talking and eating are now a source of major distress for Benny and he never complains.

It is hard to understand the despair that Benny and his family feel and the daily challenges they face as this cruel disease take hold. This is now their new reality.

To ease their stress and the financial burden they have already endured and will have to continue to bear, friends of Benny and his family are asking you all to please support this wonderful family.

In just a few weeks, Benny’s neighbours Pam, Louise, Barbara and Mary will be climbing Sliabh na mBan on Saturday, 8th March and Croagh Patrick on Saturday, 29th March to raise funds for Benny McDonagh and his family.

"We would like people to join us on one or both of these climbs and gather as much sponsorship as you can along the way," organisers stated.

"If you are not able to join us, we would be extremely grateful if you could donate what you can to help Benny and his family.

"All sponsorship or donations can be put through this GoFundMe page and please share this link to all your family and friends.

"For anyone that can join us, please contact either Pam Frisby, Louise Purcell, Mary Downey, Barbara Cooke or Kiri McDonagh so we can update everyone on meeting points and times for both climbs."

For more information on Motor Neurone Disease please visit www.imnda.ie

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