A surprise diagnosis and a feeling of being overwhelmed led to two Kildare mums penning a wonderful new book to help families of children born with Cystic Fibrosis.
‘Sixty-Five Roses’ aims to help siblings, relatives and friends better support the person with CF in their lives, while also giving comfort to parents at a very difficult and challenging time.
“In October of last year, I was incredibly lucky to give birth to the most wonderful baby girl, my beautiful daughter Aibhín. Three weeks after she was born, I received a phone call from Tallaght Hospital in Dublin, asking me to bring my daughter in to meet a doctor the following morning, as they were worried that she might have Cystic Fibrosis, based on her heel prick test results – and they were right,” explained primary school teacher Eilís Moroney, from Celbridge.
“The past few months have been understandably challenging. I was recovering from a very difficult birth when we received Aibhín’s diagnosis, and I was also so fraught with worry for my gorgeous girl, as I was literally terrified of what was ahead.
“I searched high and low for books to put my mind at ease with our new news, and to help explain our situation to my doting niece and nephew, but it was to no avail. There was nothing out there to help families take the fear out of a chronic illness diagnosis, especially when it is given to a tiny three week old baby – so I wrote my own story.”
The book, which was part-funded by Cystic Fibrosis Ireland, tells the story of a baby girl through the eyes of her big brother and his best friend, Baxter the dog. The new-born has just been diagnosed with CF, and the story tells us about the medications she has to take, the daily physiotherapy sessions, and the changes to her diet. We also get to know her friendly and caring medical team who protect her ‘Sixty-Five Roses’, which is often the first way children pronounce Cystic Fibrosis.
Cystic Fibrosis Ireland loved the storybook so much so that they sponsored the publishing of the book and are giving a storybook to all families of newly diagnosed CF babies. “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 hand washing, and so on. I hope that our book will go some way to help 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.
She teamed up with illustrator Ruth Cahill, who has worked so diligently alongside her, and is also the mother of a CF boy.
“Ruth and I were frustrated as parents at the lack of appropriate, modern and inspirational literary material available for all CF children and their families, and in particular with those families who receive a diagnosis from/shortly after their child’s birth. From my experience of CF so far, everyone I know knows someone with CF. We hope the book could also be a way of raising awareness of the medical condition.”
For Ruth, who lives in Maynooth, the book is about showing that there is more to life than Cystic Fibrosis.
“Both Eilís and myself have experienced our first-born child being given a CF diagnosis. Being a parent for the first time is hard enough and, with a CF diagnosis, it is even more challenging and scary. My own son, Harry, was diagnosed with CF in 2009 and 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,” she said.
“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.”
Eilís stressed that they wanted to take the stigma out of such a scary diagnosis, and help families deal head on with it, and to see ways in which CF can become a fun part of a family’s day. “It doesn’t have to be all doom and gloom. And most importantly, it helps people to disassociate a diagnosis from an individual – something which is very hard for a parent to do at the start,” she said.
“Aibhín is eight months old now and I am so grateful to be able to say that she is doing really mighty!! She is my first child, so it is also safe to say that she is the apple of my eye!” She praised the heel prick test as a wonderful thing, and said she was ‘so, so grateful’ that Aibhín’s diagnosis was picked up so quickly.
The book is on sale in Dubray Books, Sensational Kids in Newbridge and it’s also currently available to buy online on Amazon, Waterstones, The Book Depository and Foyles Books.
(This piece appeared originally on the HSE website https://www.hse.ie/eng/about/our-health-service/making-it-better/sixty-five-roses-a-storybook-with-a-difference.html#utm_source=broadcast_email&utm_medium=social&utm_campaign=our_health_service&utm_content=090719 )