Children often mistakenly pronounce cystic fibrosis (CF) as “65 roses.” Eilís Moroney and Ruth Cahill, both parents of children with this progressive lung disease, have turned that endearing practice into a book aimed at explaining CF to youngsters in an age-appropriate way.
Titled “Our Baby has Sixty-Five Roses,” the book is aimed at helping family members be more supportive of their loved one with CF. Its creators also hope to comfort parents of newly diagnosed young patients.
The book was written by Moroney, a primary school teacher, with Cahill handling illustrations. Both are from the Irish town of Kildare.
It tells the story of a newly diagnosed baby girl through the eyes of her big brother and his canine best friend, Baxter. The story takes readers through the baby’s daily life, from taking medications to physiotherapy sessions, and changes in her diet. The little girl’s friendly and caring healthcare team is a regular presence throughout the book.
In real life, Moroney’s first baby, Aibhin, was born last October. The road has been a challenge.
“Being my first child, I didn’t think that her feeding and toilet habits were anything out of the ordinary — she drank a lot of milk and seemed to produce a lot of dirty nappies (diapers),” Moroney said in a Cystic Fibrosis Ireland press release. “But all that changed when I received a phone call from Tallaght Hospital … [and her] diagnosis of CF was confirmed.”
“It hasn’t been an easy journey and I hope this book helps others to learn from our experience,” she said. “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. I hope that our book will go some way to help remove the paralyzing fear of a CF diagnosis for families and help people to see the bigger picture.”
Like Moroney, Cahill experienced challenges when her first child, Harry, was found to have CF. For the first few years after the diagnosis in 2009, Cahill said she felt 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,” she said. “With this book, we hope that families will realize the many wonderful talents, dreams and gifts that their children have to offer.”
The expression “65 roses” dates back to 1964, when a 4-year-old boy, upon hearing the name of his disease for the first time, pronounced it that way. Children still widely use this term to refer to their disease. 65 Roses is a registered trademark of the Cystic Fibrosis Foundation.
According to the latest numbers from the Cystic Fibrosis Registry of Ireland, the country has the highest incidence of CF in the world for its population size, and some of the most severe types of the disease.