A Wexford mother shares what it is like to cocoon her son who has cystic fibrosis, having a coronavirus scare, and the importance of donating to Cystic Fibrosis Ireland on 65 Roses Day
Ahead of 65 Roses Day in aid of Cystic Fibrosis Ireland on 10 April, Claire Merrigan shares an insight into family life with a child who has cystic fibrosis (CF).
Claire’s son Mason is just eight-years-old, and is considered very at-risk of Covid-19.
“We have been cocooning Mason at home since the schools finished up. He hasn’t left the house since then,” she says.
“We have to be so careful, but we always have had to. Mason isn’t a straightforward CF case as he has a feeding tube and he has CF-related diabetes, so it’s a combination of things that make him really at risk.”
Despite taking every precaution, the family has had their own Covid-19 scare already. When Claire spoke to Irish Country Magazine on the phone, it was her first time out of her bedroom in 14 days.
“I have been unwell, I have been coughing and getting out of breath,” Claire explains. “I have been tested and I isolated myself for two full weeks.
“It is scary. I am so fearful. It is awful having that fear that I could be the one that could pass something onto Mason. Since I have come out of the room Mason has been stuck to me like glue.”
She has been hand sanitising constantly, but hygiene and preventing the risk of infection is something the family has always been on top of.
“In a way the CF community were prepared for this kind of thing as we always have to be so conscious of potential infections and are hyper aware of our environment and everything that can be done to keep our children safe,” Claire says.
“Even before all of this, Mason would have had a bottle of hand sanitiser on his desk at school. All the little kids in his class are fantastic, they have always been aware of his CF and I have visited the school and told child-friendly stories about CF,” she adds.
For families of a child with CF, it takes team effort to take care of all steps needed to stay healthy.
Mason requires medication in the morning, afternoon and before bed, has to use nebulisers four times a day and physio twice a day. He gets most of his nutrition via a peg tube, which includes a night feed.
“For Mason it is just a way of life, he never complains, and I think all CF patients have that inner strength. Having CF is constant work, all of these tasks have to be done every day just to maintain their health,” Claire says.
“My husband Stephen works nights, so I do all the weekday night feeds, and he does the weekend ones so I can catch up on sleep. He also gets his meds ready before he leaves for work, so that they are ready for me to give to Mason when we are getting ready for school. His sister Holly is 11 and she is so caring and makes everything fun. She will do exercises with him and he will forget he is doing his physio, they are having such fun.”
They receive an exercise grant from CF Ireland. “Mason is autistic, so he doesn’t enjoy group exercise. Exercise is so important for people with CF, and so he goes to a personal trainer. It is so beneficial for him to work with someone with a good knowledge of his needs. We are so grateful to CF Ireland for all that they do, they have been so good to us since Mason was a baby.”
Please support Cystic Fibrosis Ireland on 65 Roses Day, supported by Dunnes Stores, on Friday 10th April, by donating online at 65rosesday.ie. 65 Roses Day got its name as this is the way young children often first learn to say the words ‘cystic fibrosis’. People can also text 65ROSES to 50300 for €4 to lend their support [Text costs €4. Cystic Fibrosis Ireland will receive a minimum of €3.60. Service Provider: LIKE CHARITY. Helpline: 076 6805278.].
The annual flagship fundraiser’s public activities have been cancelled due to Covid-19, and the charity is hoping the public will support their online campaign instead. This is its national fundraising day and was targeted to raise €200,000 to help fund essential supports and services needed more than ever by people with cystic fibrosis at this time.