Sasha Delaney says her experience has been "life changing".
“It’s definitely a different lifestyle,” says the 37-year-old. “Looking after my own health was a lot trickier when you have a baby, because they have to come first. I have to make sure he’s all right before myself. It’s like having two full-time jobs: a full-time job trying to keep myself well and being a mommy to him.”
Sasha was diagnosed with cystic fibrosis (CF) at just six weeks. From the age of 14, she spent about 10 to 12 years in and out of hospital. “I’d be in hospital for three weeks and then maybe come home and be back for three or four weeks. So a lot of my teenage years was spent living in a hospital. It was up and down for a very long time. It was until the new drugs started coming around.”
Getting its name from the way children often first say the words "cystic fibrosis", 65 Roses Day, on Friday, April 8th, is an important day for many Irish people. Ireland has the highest incidence of cystic fibrosis per capita in the world, with more than 1,300 people living with the condition. Ireland also has some of the most severe forms of the disease.
“I know Cystic Fibrosis Ireland (CFI) was great when I was younger and when I got older it was a point of contact for a start which was great for information or if there was anything I was struggling with,” says Sasha. “My parents did well in making sure I was never the sick child, and I was never let away with anything ’cause I was sick. I never saw myself as a sick person and looking back now, [on] the new drugs, it’s only now I realise in hindsight how sick I actually was.
“In my adult life, the exercise grant has been amazing. It’s allowed me to pay for the gym and pay for Zumba classes. I actually qualified as a Zumba instructor there.”
She also says that the PPE (personal protective equipment) grants have been helpful for her, even before the pandemic. Despite the restrictions lifting, she still maintains a strict routine because of her condition. “Even now, I still wear my mask, it’s quite important to wear a mask around and they’re quite expensive. The research that CFI is doing is always really good. It’s made lots of developments and the studies have been great in learning about CF.”
Rachel Murray says it came as a surprise when her daughter Eva (now 20 months) was diagnosed with CF as neither she or her partner had any knowledge of CF in their families.
‘Big shock’
Rachel lives in Dublin with her partner Jason and two children, James and Eva. Their daughter was born in June 2020 when Covid regulations were in full force. The diagnosis came three weeks to the day after Eva was born.
“It came as a big shock to us and it was very scary at the beginning,” says the 38-year-old. “But we did a lot of reading around it and her team in Crumlin are really good and supportive, and the outlook is so much more positive nowadays for people with CF because of the fundraising and research that has been done by families so treatment is much better now.
“It was quite unlikely, the odds are definitely against you to be born with it. But we know that we’re lucky that she was born now.”
Louise Ferncombe, from Tipperary, says her son Joseph was also diagnosed at three weeks from the heel-prick test. "He's 10 months old now so it's easier now. As time goes on, you sort of have a routine and see how great things are despite it."
Louise says she plans to hold a fundraising coffee morning and raffle in her local area for 65 Roses Day. “We probably will need the help down the line, the exercise grants and things like that.”
With a target of €350,000, funds raised on 65 Roses Day go to provide a range of much-needed supports for people with cystic fibrosis – including PPE, exercise grants, counselling sessions and grants for people undergoing a transplant, or bereavement grants. Funds also go to support cystic fibrosis research and the building of new CF hospital facilities and the funding of specialist CF staff.
“We advocate for improvement in hospitals for inpatient and outpatient services,” says Philip Watt, chief executive of CF Ireland. “We also fund those improvements. We have assisted seven hospitals in providing funding for better services. We fund posts such as nurses, physiotherapists and dietitians in a number of hospitals.
“We provide space for people to get involved with each other and for parents, it’s kind of hard when they’re told that their child has been diagnosed with CF. That can be a very worrying time but there’s a lot more hope.
“We have advocated for really important drugs and they’ve had a dramatic impact on people’s lives in the last 10 years. It’s not only us helping members but members helping each other. The most important thing we provide is hope. To let them know that they’re not in this alone as they battle this awful disease.”
