Charlie’s illness has brought us closer together, but made us realize that life is fragile

Charlie’s illness has brought us closer together, but made us realize that life is fragile

When Charlie received his terminal diagnosis, our lives suddenly came to a halt. Everyday chatter was replaced by the fear of not knowing what was coming our way—or if we could handle it. As his symptoms got worse, freedom and spontaneity became a thing of the past, so we tried to keep our heads above water as best we could.

harlie’s illness has brought us closer together, but it has also made us realize how fragile life is. It is very disturbing and disturbing to see what this disease does to a body. I feel Charlie’s pain as he chokes on his food in public and has to walk away, too embarrassed to sit there and clear his throat when all eyes are on him.

I see the tears of frustration when his words don’t come out. But Charlie is a fighter – we can learn a lot from him. He’s the bravest human being you could ever meet and nothing, not even this damn disease, will ever stop him.

During the Climb with Charlie campaign, I witnessed his absolute focus and determination to raise funds and publicize the Irish Motor Neurone Disease Association and Pieta. It is an achievement in itself to raise more than €3 million while trying to cope with the disease. He showed us what you can achieve when you are at your lowest point in life.

When Charlie cries in public, his tears are of gratitude for all the letters and cards we’ve received and the simple hello’s when we’re out and about. Since the diagnosis I have met some wonderful people. Others have tried to take advantage of his kindness, but there are very few.

I am very lucky to have met Charlie – not everyone is lucky enough to stumble upon someone and fall in love.

Having a goal helped us get through our daily struggles and Climb with Charlie was a great distraction.

Working as a producer at RTÉ allowed me to use my skills to produce and stage the climb alongside two of Westport’s best: Father Charlie McDonnell and Inspector Denis Harrington. The four of us developed a great friendship and many meetings were held in Matt Molloy’s pub, where we had the great honor of getting to know Matt himself.

One of my fondest memories was standing in a field in Murrisk the day before the climb, across the road from Croagh Patrick, where the Great Famine Memorial Ship is. It was a beautiful sunny day and as we looked up to the sky, the sound of an army helicopter came into view. The Air Corps had flown in one of their helicopters to help transfer the Clew Bay Pipe Band’s musical instruments and Mid-West Radio’s generator so they could play and be heard atop Croagh Patrick. This had never been done before.

We had met Peter Carney, who takes care of the band, on one of our many visits. He introduced us to Des Cafferkey, who had composed a beautiful piece of music called ‘Heroes’. I wanted it to be played at the top of Croagh Patrick and the Air Corps made sure of it.

Sean Clancy, our armed forces chief of staff, had contacted Charlie directly. He wanted to join him on the climb and help us where he could. What a great man. What a beautiful gesture.

Music and Charlie go hand in hand and not a night goes by without Bruce Springsteen being played. We absolutely love him. They say you should never meet your heroes, but we’d turn a good cheek to meet Brucey in a flash.

Charlie was a great singer before this terrible disease took away his beautiful voice. I miss hearing him sing Frank Harte’s ‘Henry My Son’.

During the climb, Charlie came up with the idea to make a photo album to capture the day. It was a huge task, but we knew it would be something special and a keepsake for our families—especially Charlie’s two daughters, Orla and Neasa, who are so supportive of their father.

Merrion Press came right on board and turned the book over in four weeks, which is unprecedented in the bookstore. All author proceeds go to the two charities.

What’s so special is that it shows Charlie’s struggle to get to the top of Croagh Patrick and the joy of reaching it.

There he stands, surrounded by all his family, friends and complete strangers who hugged and encouraged him to reach the top.

‘Climb with Charlie’ is available in bookstores across the country and online