"If I can be half the man he was in his 25 years I will go to my grave a very happy man" - Paul and Cahir's story

My younger brother passed away on 4 October 2023. He was waiting on a double lung transplant and it didn’t happen soon enough or quick enough and he succumbed to CF. He was due to get married on 22 June 2024 – I was going to be his best man.

He fell into the minority of people that currently have no access to treatment or life-saving drugs. It’s great how many lives they have saved and lots of people have a great quality of life but unfortunately there are still plenty of people with CF who don’t benefit from them.

No one is safe from CF until everyone with CF is safe. Everyone with CF needs access to lifesaving drugs. These people are looking to live, looking to breathe. They are not statistics and numbers, they are real people and real families. 

My brother Cahir was 25 years young. He had plans to do so much with his young life. He wanted to get married, start a family and get a house. The first thing he wanted to do after his transplant was to go for a swim. He battled for 25 years and put up a fight, but I shared a bedroom with him for more than 18 years and saw him on his good days and bad days. There was many a night I was up with him, but I wouldn’t change anything about that time.

We had very little awareness of CF growing up. It was normal for us to see him coughing and having physio – it became the norm when in reality it’s far from normal. It wasn’t until me and my sister got into our teenage years where we understood what CF was. You heard these stories about low life expectancies, but it never entered into my head. We had this hope and this dream that medicine was going to develop and advance and he was going to get better. 

I always thought Cahir would have a successful and long life and always said he would outlive me. He was playing Gaelic football and hurling. He was very good. But then it got to a stage where his illness was taking over and I remember the CF doctors wanted to put a peg in for tube feeding but he withstood that. My father put a hose through his nose into his belly for two years to allow him to continue playing sport. For two solid years, that was his dedication. CF wouldn’t beat him or define him. He never shied away from it but he just wanted to be treated like a normal child, teenager, and then man. After two years he had to get the peg in, but it tells you how passionate he was. 

In August 2022, he was on a beach and got a collapsed lung. We didn’t know it then, but that was the start of his decline. He was in hospital for 2-3 months and they tried a number of chest drains to get the lung back, which wasn’t without its risks. He was an all-round battler and he never let it define him. He was always asking about other people even at his sickest. Never once would he have lain down and wanted sympathy, he always just asked for other people.

He went to university and there were trials and tribulations during his 4 years. He got very ill and spent a number of months in hospital. He missed a lot of work and exams and his tutor and course coordinator were very understanding. He repeated a year and graduated with a 2.1 in real estate and for a while was working as an estate agent. After his lung collapsed he had to leave and he never got the chance the return. 

When the ICU moved him downstairs to their ward at no point did he think he was going to die. He said to my father “right da, see you in a few days time”. Nobody was expecting it, not even the doctors, and we certainly weren’t. 

A few weeks before he died my 71 year old granny died of cancer. She was very religious and she left her rosary beads for him. He was going to take them with him waiting for the transplant. He asked for them in the ICU, and when he died, he was buried with them.

It still hasn’t hit home for us. My family were living and breathing CF and we still are. It’s so important to get his story out there and raise awareness of CF. For those not eligible for modulators, the work isn’t done, the CF battle continues. They won’t be forgotten about and we will keep going until we have treatment for everyone. 

It's affected me. His death has left what can only be described as a hole, a void which will never ever be filled. He was my only brother and me and him were very, very close. The whole family are very close and tight-knit and it has genuinely hurt us all. It’s the youngest that looks up to the oldest in most households but that was the opposite in ours. Me the oldest, looked up to him the youngest. To the day I pass I will always look up to him. If I can be half the man he was in his 25 years I will go to my grave a very happy man. 

If you were to write a book about him, it would turn into a bestseller. He never once complained about anything. When he was a child and transferred over to the adult unit he was never treated like a number or a patient. He was treated as a loved one. Everyone in the CF team was amazing. They treated him with the utmost grace, pride and dignity. 

Every time I visited him in the hospital, I knew my brother was the only young person on his ward, and it was so hard for me to accept that. There were so many people who had lived long lives, and all he wanted to do was live and breathe and to have a chance. And unfortunately he couldn’t get that chance. I hope his story can change the perception of the need to raise awareness and money for cystic fibrosis. In 2024 nobody should be waiting on medication or a transplant.