Harry, 12, from Kildare, has cystic fibrosis which means he's been living in a 'cocooning bubble' for his whole life. His mum, Ruth Cahill says their family has been familiar with public health measures long before the pandemic arrived, and believes we need to keep making smart choices.
“I feel we have been living in a cocooning bubble since the day CF came into our world. The will to protect at all costs the person we love. We already had hand sanitiser in our car, and in every handbag. We had masks in the glove compartment of the car. We moved tables in restaurants or left parties when someone coughed or sneezed near us. We missed Christmases, Easter celebrations, Paddy's Day, and birthdays over the years due to being in hospital or because we were concerned about catching a virus. Since the pandemic, everyone has been experiencing our daily worries. But life can still be wonderful. Life can still bring you daily joy. Life is for living and we need to keep going. We just need to make smart choices."
With public collections unfortunately cancelled for the second year running due to Covid-19, Cystic Fibrosis Ireland (CFI) is instead encouraging the public to support people with cystic fibrosis (CF) this 65 Roses Day by donating online at 65RosesDay.ie.
So a whole team of famous Irish people have offered their support to the online appeal this year.
Joining An Taoiseach Micheál Martin TD were: news anchor Bryan Dobson; nutritionist Rosanna Davison; celebrity chef Adrian Martin; Wild Youth frontman, Dave Whelan; GAA pundit Joe Brolly; TV hosts Mairead Ronan and Diana Bunici; sporting heroes Michael Carruth, Cian O’Connor and Louise Galvin; and singers Brian Kennedy, Jake Carter and Michael English. Accompanying them in painting a rosy picture for 65 Roses Day were Harry Cahill (age 12), who has CF, and his little sister Emily (age 10), from Maynooth, Co. Kildare.
And there is also a special 65 Roses Day concert being streamed online at cfireland.ie today. Special guests include: Brian Kennedy, The High Kings, The Celtic Tenors, Dominic Kirwan, Celine Byrne, Mary Duff, Louise Morrissey and Michael English. Master of Ceremonies for the occasion is RTÉ news anchor, Bryan Dobson. The free concert gets underway at 8pm, with donations gratefully accepted.
Funds raised on 65 Roses Day go to support a range of services for people with CF including funding of hospital CF facilities and staff, research, and patient grants for supports such as counselling, exercise equipment, fertility treatment, and transplant out-of-pocket expenses.
World No 1 for CF 65 Roses Day gets its name from the way children often first say the words 'cystic fibrosis'. Ireland has the highest incidence of CF in the world with more than 1,400 people living with CF. Indeed, the incidence of CF in Ireland among the indigenous population is almost three times the average rate in other EU countries and the USA. Ireland also has some of the most severe forms of the disease.
Harry's mum, Ruth, says there have been some amazing strides in research and drugs for this illness: “The future for people with cystic fibrosis has been transformed in recent years. Twelve years ago, we feared for our child's future as not only did he have CF but he had a very rare mutation that would be hard to fix. But, last November, our son started a new drug, Kaftrio. We have seen in the past six months how life-changing this drug is. I love that Cystic Fibrosis Ireland and other associations around the world have funded early real-world data studies on this new drug. Our son is part of this study. This data will pave the way to show smaller countries the importance of this incredibly expensive medication. This data will save lives. The future for people with CF is so much brighter."
Long-time Cystic Fibrosis Ireland ambassador, Rosanna Davison, has seen in her wider circle of friends just how challenging life with CF can be: “From daily medications, nebulisers, chest physio — and that’s when things are good — to fortnight-long stays and longer in hospital when people catch a bug and need to go on intravenous antibiotics. Many people with CF may end up being admitted for lengthy stays two and three times a year. It is a battle with the human condition 24/7. Now in the middle of a pandemic, people with CF have had to cut themselves off from the world in order to keep safe. That’s why 65 Roses Day is so important in letting the CF community know that we have their backs, that we are thinking of them and that we will be there for them now and into the future.”
You can follow Cystic Fibrosis Ireland on Facebook at @CysticFibrosisIreland, and on Twitter and Instagram @cf_ireland. Hashtag is #65RosesDay