A new book, which aims to explain the condition, cystic fibrosis (CF), to children in an age-appropriate way, has been launched.
Our Baby Has Sixty-Five Roses was written by primary school teacher, Eilís Moroney, from Kildare, with artwork by designer and fellow Kildare mother, Ruth Cahill. Both have children affected by the condition.
The book aims to help siblings and relatives to understand the condition and support the person with CF, while also giving comfort to parents at what can be a very difficult and challenging time.
However, it is also aimed at others, such as classmates, friends and cousins.
The 65 roses in the title refers to the way children often mistakenly say cystic fibrosis.
CF is Ireland's most common life-threatening inherited disease. There are almost 1,400 people in Ireland with CF and this country has the highest prevalence and the some of the most severe types of CF in the world.
CF affects the regulation of absorption and secretion of salt and water in various parts of the body including the lungs, pancreas and gastrointestinal tracts. This defect inhibits the flow of salt and water through the body's cells, causing a build-up of thick, sticky mucus, which can clog airways and harbour harmful bacteria.
Symptoms reported by people with CF vary significantly in severity from mild to debilitating. The most common symptom is recurrent chest infections, which result in lung damage.
The book tells the story of a baby girl through the eyes of her big brother and his best friend, Baxter the dog.
The baby has just been diagnosed with CF, and the reader learns about her condition and the care she requires, including the medications she has to take, the daily physiotherapy sessions she needs, and the changes made to her diet.
The reader also learns about her friendly and caring medical team.
Ms Moroney's daughter, Aibhín, was born last October. Ms Moroney noticed that her daughter drank a lot of milk and had a lot of dirty nappies, but as this was her first child, she did not think this was anything out of the ordinary.
"All that changed when I received a phone call from Tallaght Hospital and I was asked to come back in with my daughter, following which a diagnosis of CF was confirmed.
"It hasn't been an easy journey and I hope this book helps others to learn from our experience. The words and pictures gently explain a day in the life of a baby with CF, and offer ways in which the entire family can get involved with physiotherapy and ensuring germ control through handwashing, and so on," she explained.
She said that she hopes the book will help to remove ‘the paralysing fear' of a CF diagnosis for families and help people to see the bigger picture.
"Nobody should be defined by a medical condition that they may have," Ms Moroney added.
Ms Cahill's firstborn child, Harry, was also diagnosed with CF in 2009. She noted that being a parent for the first time is hard enough, but with a CF diagnosis, ‘it is even more challenging and scary'.
"For the first few years, I felt very lost. I yearned for the life that I dreamed my child would have, and of course, the life that we as a family would have. But looking back, it is clear to me now that there is more to life than CF.
"We need to support our children in living their lives to the full and give that confidence to other parents. For those who might be overwhelmed with worry for their newly diagnosed baby, we want them to know that they are not alone. With this book, we hope that families will realise the many wonderful talents, dreams and gifts that their children have to offer and will achieve," Ms Cahill said.
The book was part-funded by Cystic Fibrosis Ireland. It is being sold through Amazon for €11.99, and is also available to order from Cystic Fibrosis Ireland here.
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