How one family is dealing with cystic fibrosis
For Zoë and David Woodward in Balgriffin, Dublin, finding out their new baby had cystic fibrosis was "like planning a trip to Australia but finding ourselves in Antarctica".
"Emily was our first child and we had spent nine months dreaming and making plans for our new family. We knew everything would change with her arrival; we could never have imagined what was ahead of us," explains Zoë.
Now 16-month-old Emily's CF is being managed well. She takes 13 doses of medication and has a routine of physical therapy daily, to help keep her lungs free of congestion and infection.
Plans for Emily to be sent to a creche when her mother returned to work are no longer possible. Instead her parents have hired a physiotherapist to care for her at home.
"Cystic fibrosis is a devastating diagnosis for any parent to receive. There was no history of it in either of our families and we knew nothing about the disease. In the literature we received, the words "life threatening" jumped out at us. Our lives were turned upside down. Many of our plans and dreams for Emily were shattered. Everything had to be re-evaluated, we now have a completely different journey ahead of us."
Zoë and David are now expecting their second child and recent results have shown that this baby will also be born with CF.
The couple are now giving serious thought to moving out of Ireland, to a country with better CF services, when their family gets older. They are not the only parents of CF children to be considering this, Zoë adds.
The "heartbreaking" fact is that the current average life span for a person with CF in Ireland is 32 years, the lowest average in a first world country according to Zoë. Living in Canada or in any of the Nordic countries would add on 10 to 15 years, even living in Northern Ireland would add on nine years, she says.
"Our children will never know what it is like to live without a terminal illness. Cystic fibrosis will never define them as people, but it will steer decisions and steps they make. They are born with a life sentence.
"The only way to lift or ease this sentence is through the provision of proper medical care and funding for research, in order to discover new ways of alleviating symptoms or curing cystic fibrosis."