A mum and her five-year-old daughter who both suffer from the incurable lung condition cystic fibrosis (CF) have appealed for the public to back an annual fundraising day.
Julie Forster, from Enniscorthy, was unaware she had the condition until she was 42, a year after her daughter Ruth was diagnosed.
Tomorrow, Cystic Fibrosis Ireland (CFI) is holding 65 Roses Day, which get its name from the way in which young children often pronounce the words “cystic fibrosis”.
Amidst a sea of purple roses at Government Buildings in Dublin, Taoiseach Leo Varadkar and model and CFI ambassador, Rosanna Davison, urged the public to donate to the campaign.
Around 1,400 people are living with cystic fibrosis in Ireland – the highest number ever recorded – following advances in treatment and care.
It is a lifelong inherited condition that causes sticky mucus to build up in the lungs and digestive system.
Julie Forster said: “Ruth’s lungs are very good, she’s only had one serious infection since she was diagnosed when she was four-months-old.
“She has to be careful about washing her hands but she just accepts it, she hasn’t questioned it as of yet.
“Her older brother, Tom and sister, Shauna are fine so it was a shock when we found out she had the condition.
Is everyone all set for #65RosesDay? We're delighted with the countrywide representation from all of our volunteers this year! Thanks to everyone who has offered their time on our biggest fundraising day of the year! Pictured are some of our venues in Galway! pic.twitter.com/KnEMfALyUN— CF Ireland (@cf_ireland) April 11, 2019
“The average age of life expectancy has gone up by a few years since she was born, which is promising.”
CFI is aiming to raise €120,000 this year to provide a range of patient and family support.
CFI chairperson Patricia Duffy-Barber, who also has the condition, said: “The fundraising is hugely important in terms of research.
“We need ongoing research to help with determining the best sort of treatment for a small number of people who present with different types of genes.
“There is medication that will treat basic defects in 90% of gene types but there is a small percentage who haven’t got that yet who are eagerly hoping science will catch up with the illness and will have something that will be potentially life changing for them.
“It’s early days with a lot of the treatments but we know that in the US some people have found huge benefits and gone on to have children.”
Ireland has the highest incidence of the chronic inherited lung disease in the world and has some of the most severe types of the disease.
People can donate to the campaign by buying a purple rose for €2 or donating online at 65RosesDay.ie
- Press Association