Best pals Eva Rose and Ciara help launch Cystic Fibrosis Ireland's 65 Roses Day
Best pals Eva Rose Martin (5) and Ciara Moore (6) were all smiles as they got a half day off school to help Taoiseach Leo Varadkar launch Cystic Fibrosis Ireland’s 65 Roses Day tomorrow.
Junior infants pupil Eva Rose from St Margaret’s, County Dublin, is one of more than 1,300 people here living with CF, new figures from the Cystic Fibrosis Registry of Ireland show.
Taking its name from the way children affected typically first pronounce the words ‘Cystic Fibrosis’, the 65 Roses campaign aims to raise €100,000 for vital services including clinical posts and transplant support.
Speaking to Independent.ie ahead of the nationwide fundraising appeal, mum Bernie said: “Eva Rose was diagnosed at three and a half weeks.
“She wasn’t absorbing any of her food, but she was feeding constantly, and her skin started peeling like a snake. It turned out that was from malnourishment.
“Thankfully, she was picked up through the newborn screening process, so we got a quick diagnosis.
“Daily, when she’s well, she’d do a minimum of two nebulisers, chest physiotherapy twice a day and then she takes about 20 capsules when she eats to absorb her food and to help her gain weight,” added the mum-of-two.
“It’s hard because every time she gets a cold it turns into a two or three week affair, and you don’t know will there be hospital; whereas [for] other kids, a cough or a runny nose is no big deal.”
An estimated 1,339 people in Ireland - of whom 565 are children - currently live with the genetic disorder, which primarily affects the lungs and results in shortened life expectancy.
Urging others to pick up a purple rose for €2 in participating stores tomorrow, Dancing With the Stars’ spin-off host Bláthnaid Treacy praised the show’s judge, Julian Benson, for opening up about battling the disease earlier this year, and revealed another personal reason for getting involved.
“A friend of mine who I went to school with passed away [due to CF] back in October,” the Can’t Stop Dancing presenter and Cystic Fibrosis Ireland ambassador said, “so it was really important and it was really an honour, actually, for me to be part of this.
“And then, obviously, working with Julian Benson on Dancing with the Stars [who] recently spoke about his CF.
“I really admire him for doing it because it just shows such strength.
“He’s such a huge inspiration to anyone who has CF, especially any little kids who are watching Dancing with the Stars in hospital, and there’s one of the judges there on screen, dancing away, huge smile on his face, everybody loving him and him absolutely loving life, and having such a long, wonderful life as well.”