Children’s story sheds light on crippling effects of lung disease

2 October 2024

THREE local people are championing a new children’s book aimed at raising awareness about a debilitating lung disease.

John Toner from Newcastle, Castlewellan’s Donna Cooney and Fay Coffey from Spa have all praised ‘Pete The Puffling’s Brave Adventure, which is designed to educate children and young families about pulmonary fibrosis.

The book tells the story of Pete, a puffling who worships his grandfather and best friend, Percy.

Percy is diagnosed with pulmonary fibrosis, which is a shock to young Pete.

Unaware of what the disease is, he navigates questions about how it will change Grandpa Percy and if they can still spend time together.

Pete embodies many young people who have similar questions when their loved ones are diagnosed with a condition where the lungs stiffen and harden, making it increasingly difficult for patients to breathe.

Throughout the book, Pete learns to understand the condition and finds new ways to make memories with his beloved Grandpa.

The book is written by Clare Donohoe and Janet Bamford, who have been personally affected by disease, with all donations going to the Pulmonary Fibrosis Northern Ireland charity.

With over 2,000 people living with the disease across the province, it is largely unknown to the general public, unless someone or a family member receives a diagnosis, as was the case for John, Donna and Fay.

In 2018 John, a former manager of the Slieve Donard Hotel and Europa Hotel, was diagnosed with the disease after having unexplainable breathlessness. He is now receiving palliative care and needs oxygen 24/7.

“I had problems walking short distances and started to get breathless,” John explained.

“I went to the doctors in the Ulster Hospital to see what it was. They ran some tests and eventually I was told that I had pulmonary fibrosis and that the life expectancy was only three to five years.

“I’d never heard of the condition before, but was told that it is not a pleasant disease to live with which followed discussions with how to best treat the symptoms.”

Every diagnosis of the condition progresses at its own rate. Sadly it is incurable, with no known cause.

“I take each week as it comes,” John said. “I always set myself targets to achieve and make sure I get out and do things, even if it’s small.

“I’m constantly fatigued which is one of the most common symptoms. It’s a disease that never lets you get enough sleep.”

Having had a distinguished career in the hospitality career, documenting the highs of his life and career.

John wrote a book entitled ‘ A Job Well Done’ about his distinguished career in the hospitality industry. It can be bought at https://burnsbooks.co.uk/?v=79cba1185463.

John, who has 13 grandchildren, praised ‘Pete the Puppling’s Brave Adventure’, for how it helps children better understand the nature of the disease.

“It’s a brilliant book,” John said. “Some of my grandchildren are too young to understand what it is, but my grandson Peter identified with the book.

“They’re great kids and are always asking me ‘do you need anything Granda’ – they’re just excellent.

“I’m so thankful to the ambassadors at PFNI. They are a charity that would do anything for you and I have to pay a great deal of thanks to the chairman, Tom McMillan, who is so supportive – they all do remarkable work.”

Donna, who lost her husband, George, to pulmonary fibrosis, said she wished the book was available for her grandson when her husband was battling the disease.

“We didn’t know what it was either,” Donna explained. “George died in November 2019, but was only diagnosed six weeks earlier. He was finding it very hard to breathe, so we brought him to the Ulster Hospital.

“The disease progressed very fast and he passed away in hospital. It was a very hard time because we were still coming to terms with what the condition was and then very quickly George was no longer with us,” she said.

“Our grandson at the time was nine and we found it very difficult to explain to him what the disease was and how to approach the subject with him.

“I think if the book was around then, it would have made for an easier discussion with my grandson about what his Granda was going through.”

No research has indicated that pulmonary fibrosis is genetic. However since George’s death, his brothers, Johnny and Charles, have both passed away from the same disease.

“That knocked me,” Donna said. “It’s something I still struggle to comprehend. The disease is rare but to have three brothers die of the same disease, it just floored me – they were all so close and played in a band together.

“It makes me worry about my daughters and grandchildren that there is a possibility this can be genetic – it just shows how little we all know about this condition.”

Fay who lost her husband David to the same disease last year, says no two people have the same experience with pulmonary fibrosis.

Since her husband’s death she has become an ambassador for PFNI, driving up awareness about the condition and helping those who suffer with it.

“It’s a terrible disease to have but the work being done by PFNI is just incredible and we are like a family,” Fay said.

“There is so much work to be done and we want to educate more people about the disease.

“Our chairman Tom is brilliant and is so supportive to families who are suffering with the condition.

“I feel such an affinity for this charity and I am so glad that a children's book has been published to help raise awareness about the disease and help children understand and navigate what their loved ones are going through.”

For more information about pulmonary fibrosis and the PFNI charity, visit https://pulmonaryfibrosisni.co.uk/.

Pete The Puffling’s Brave Adventure can also be bought via the website.

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