'It was very emotional for my mother to see me walking down the aisle' - mum (35) living with cystic fibrosis
“It was very emotional for my mother to see me walking down the aisle. Maybe she didn’t think when I was born that it would happen.”
Ciara Deegan, from Firhouse in Dublin, was diagnosed with cystic fibrosis when she was six weeks old, following a bout of pneumonia.
The diagnosis was devastating for her parents, but Ciara has exceeded their expectations and lived a normal life.
She has only ever been hospitalised twice due to her condition. And exercise is a big part of her life, to help her manage her condition.
Today, it’s still a great source of pride for Ciara, remembering the day she got married to Stephen, whom she met in school.
“We met in school, we were doing our leaving cert. We were 25 when we got married, we’ll be ten years married next year.”
“We grew up together and went to Australia together for three months.”
“My mam was over the moon that I was getting married, it was a very special day for her. It was 28 degrees on the day, the 29th of May.”
"There were 150 people there. My husband plays music, his band played and I went to bed at four or five that night.”
Ciara, now mother to two-year-old Ethan, says Stephen accepted her condition from the moment she told him about it.
“I didn’t tell him for a while. It was probably a good couple of months into the relationship that I told him… looking at me, I don’t look sick. He was fine about it, it didn’t bother him at all.”
“He was never really fazed by it would be diff if I was very unwell.”
“When I was diagnosed at six weeks, it would have been ‘oh my God, it’s absolutely terrible that she has cystic fibrosis’. I’ve two older brothers but they don’t have cystic fibrosis. One is a carrier but the other isn’t.”
“My Mam used to do a therapy where she would tap my back and you’d cough up sputum and keep things clear. Now I do breathing exercises every day.”
Ciara spends half an hour each morning and evening taking medications and treatment for her condition. She takes insulin for CF-related diabetes, and she is on long-term antibiotics and is also a candidate for Orkambi.
Ciara wants to send the message out to anyone who gets a diagnosis of cystic fibrosis for their baby, that their child can grow up to lead a fulfilled life.
Today, Cystic Fibrosis Ireland is launching 65 Roses Day which occurs on Friday April 13.
“Unfortunately there are a lot of people who are extremely bad with cystic fibrosis, and they’re in and out of hospital, I’m extremely lucky that I mustn’t have a bad strain.”
"I’m lucky I’m not too sick with the cystic fibrosis, my little boy keeps me busy.”
“I try and do park runs, go for walks most days, it keeps me healthy. If I didn’t do that, I’d be in trouble with chest infections.”
“I’d like to be able to show people if they have babies that have just been diagnosed with it, I’d like to show them that this is terrible, but you can go to college, lead a normal life. You can get married, you can have children.”
Cystic Fibrosis Ireland provided an exercise grant for Ciara when she was in college to allow her to go to the gym. The charity also provides financial help to families of people undergoing transplants, as well as counselling, among other things. The diagnosis can be difficult to come to terms with, Ciara points out.
“When Ethan got christened I got very unwell, and I had to go to the christening with home IVs. I put a bandage on my arm and put a coat on it so you couldn’t see it. It was bad timing. Ethan was only five or six months old. That was tough.”
“If there are colds in the house, I’ve to try and avoid them. It’s hard with a two and a half-year-old. I’d try and keep washing my hands, and step away from the germs.”
“Having a child, it really hits you that you have to stay well and healthy for that child. If you are in hospital and you see people who are extremely ill, you would think ‘please God it won’t get to that’.”
Ciara is urging people to support Cystic Fibrosis Ireland on 65 Roses Day, Friday 13th April, by buying a purple rose for €2 in participating shopping centres and Spar stores across the country or by donating online at www.65rosesday.ie.