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Our Baby has Sixty-Five Roses

Parents of Children with Cystic Fibrosis (CF) Launch Book to Explain CF to Other Kids

Our Baby has Sixty-Five Roses is the title of a new book just launched by Kildare mums Eilís Moroney and Ruth Cahill to help explain cystic fibrosis (CF) to other children in an age-appropriate way. “Sixty-Five Roses” is how children often first say the words “cystic fibrosis” and for Eilís and Ruth, who are both parents of children with CF, the book is about helping siblings and relatives better support the person with CF in their lives, while also giving comfort to parents at a very difficult and challenging time.

The book has been written by primary school teacher Eilís, with designer Ruth undertaking the artwork. Not only is the book for new parents and families, but is also aimed at friends, class-mates, cousins, pre-schools, primary schools, and hospitals. It is being sold through Amazon for €11.99, and is also available to order from Cystic Fibrosis Ireland – visit www.cfireland.ie - from Thursday, June 20th.

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 infant has just been diagnosed with CF, and we read 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”.

Latest figures from the Cystic Fibrosis Registry of Ireland show that there are almost 1,400 people living with CF in this country, with 47 cases recorded in County Kildare. In fact, Ireland has the highest incidence of CF in the world for its population size, and some of the most severe types of the disease.

For Eilís Moroney, a native of Celbridge, the last eight months have been a huge learning curve:
“My beautiful daughter Aibhín was born last October. 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. But 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 hand washing, and so on. 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. Nobody should be defined by a medical condition that they may have.”

For Ruth Cahill, living in Maynooth, the book is about showing that there is more to life than CF:
“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.

“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.”

 

CFI Update March 2019

Cystic Fibrosis Ireland are delighted to inform members of several positive updates which have taken place over the past number of weeks. Watch the video to hear more about what has been happening in Cystic Fibrosis Ireland.

 

 

 

Statement from Cystic Fibrosis Ireland re Soft Opt-out Organ Donation Legislation

The seven patient groups which are members of the Irish Donor Network (IDN) strongly support the announcement that the Cabinet has approved a proposal for the introduction of a Human Tissues Bill, including soft opt-out organ donation consent and altruistic kidney donation.

Philip Watt, Chairperson of the Irish Donor Network, and CEO of Cystic Fibrosis Ireland, welcomed the announcement:

“The proposed change in organ donor consent will optimise the availability of solid organs – kidney, heart, lungs, pancreas and liver – for transplantation. This means that more people will be given the gift of life of a transplant that has the potential to lengthen life and improve the quality of life.

“The legislation will also need to be accompanied by the necessary resources including funding for an online registry, an awareness programme to better inform the public about the proposed change, and resources to employ more specialised organ donation and transplant staff and to open pre- and post-transplant rooms.

“We know from research that the vast majority of the Irish population are willing to donate organs but, unfortunately, many have not registered that wish or spoken to their next of kin about organ donation. The new system will help to bridge that gap between wishing to do something and actually taking the steps to implement that wish.”

Under the proposed new system, the presumption is that people want to donate their organs, unless they explicitly opt out through an online register, or their family declines (hence called “soft opt-out” as opposed to “hard opt-out” where next of kin are not involved). It is a system which is already in place in almost every other country in Europe.

According to the latest report from Organ Donation Transplant Ireland, which is for 2018, there were:

  • 234 organ donations from 81 deceased donors in 2018, compared with 260 donations from 99 deceased donors in 2017
  • 522 people on waiting lists for liver, kidney, heart, lungs or pancreas transplants
  • 42 people died awaiting a transplant

The seven patient groups represented by the Irish Donor Network are the Alpha One Foundation, Cystic Fibrosis Ireland, COPD Support Ireland, Cystinosis Ireland, the Irish Heart and Lung Transplant Association, the Irish Lung Fibrosis Association, and the Pulmonary Hypertension Association Ireland.

ENDS

For further information: Philip Watt, Chief Executive, Cystic Fibrosis Ireland, tel. 01 496 2433 / 087 637 0557