Mother shines light on incredible work of Cystic Fibrosis Ireland
WEXFORD people are being urged to support Cystic Fibrosis Ireland to help it meet its fundraising target of €300,000 ahead of 65 Roses Day on Friday, April 12.
Volunteers will be out in force selling purple roses at participating shops across the country, including Gorey Shopping Centre, Dunnes Stores in The Mill Centre, Enniscorthy, Dunnes Stores on The Avenue, Gorey and Dunnes Stores in Redmond Square, Wexford.
Supporting the campaign this year and encouraging the public to get involved is Claire Merrigan from Gorey, whose son Mason lives with Cystic Fibrosis (CF).
“Cystic fibrosis is a genetic condition, which means the impact differs from person to person. Mason is a very happy child but CF can take its toll and it is a challenging condition that children shouldn’t have to face. I am asking everyone to get on board and support CF Ireland on 65 Roses Day, not only to help CFI continue to provide essential services, but hopefully research someday will get to the point where a cure is found,” said Claire.
Claire’s son Mason was diagnosed with Cystic Fibrosis at three weeks old. Mason became one of the first babies in Ireland to be diagnosed with CF using the heel prick test as in Ireland, people are generally diagnosed with CF using sweat tests.
CF Ireland supported Claire and her family from the very beginning when Mason was diagnosed 12 years ago. “We were struggling financially because we had to take time off work. We were put in touch with CF Ireland and they helped us so much. I couldn’t believe the support we got from them, not just financially but emotionally, everything. They were just so good and I can never repay them with the way they’ve helped us, even to this day,” said Claire.
At the time, neither Claire nor her husband Steven knew that they carried the CF gene. Cystic Fibrosis is an inherited chronic disease that primarily affects the lungs and the digestive system. Ireland has the highest incidence of CF in the world and some of the most severe types. There are more than 1,400 people living with CF in Ireland and the number is increasing each year as a result of improvements in treatment and care.
“Mason wouldn’t be your general cystic fibrosis baby story, he was very ill. He was in hospital from December and we didn’t end up getting out until June. The first thing I did the weekend he got out was the mini marathon with my sisters and friends. I’ve done the awareness day at the Gorey Shopping Centre every day since then as well. Gorey has been a huge support to us,” said Claire.
Since Mason’s diagnosis, Claire has spent a lot of time raising awareness and advocating for the charity and sells roses at Gorey Shopping Centre each year. She was also the secretary of the Wexford CFI branch at one point and later went on to become chairperson.
It’s important for people with CF to stay at least 6 feet apart from others with CF and anyone with a cold or infection. Two people with CF cannot meet which adds another element of difficulty to the disease.
“We have a parents support group which gathered at least once a year before Covid. It’s a really tight-knit community because we all understand what we’re going through,” said Claire.
With the help of the CFI team, Mason was diagnosed with Autism at four years old and at six years old he was also diagnosed with CF related diabetes.
CF Ireland provide an exercise grant which has been of huge benefit to Mason as he gets the opportunity to take swimming lessons each week. “He needs physio for his lungs, his feet, his legs and his joints so he started one on one swimming lessons here in Courtown and the exercise really helps with all that. I can’t believe how well he’s doing, how much he’s enjoying it and how much it’s helping the pain.”
“If you met him, he’s the happiest, most amazing little boy that you ever could meet. Every body says that he just melts your heart and makes you shine and see the world in a different way. He’s the centre of our world and a brilliant child,” said Claire.
Funds raised on 65 Roses Day will help to provide exercise equipment, counselling sessions, and grants for people with CF undergoing a transplant, fertility assessment or families with CF who have recently been bereaved. Funds also go to support Cystic Fibrosis research and the building of new CF hospital facilities and the funding of specialist CF staff.
65 Roses Day derives its name from the way in which young children often first say the words “cystic fibrosis” and seeks to raise much-needed funds for Cystic Fibrosis services and supports for people with Cystic Fibrosis in Ireland.
Cystic Fibrosis Ireland is calling on the people of Wexford to buy a purple rose in participating Dunnes Stores, Shopping Centres and other outlets nationwide to help raise much needed funds for people in Wexford living with CF or support the cause by donating online at 65roses.ie.