“WE’RE VERY LUCKY,” says mum-of-two Gemma Dardis, without a hint of doubt in her voice.
She says it as we talk about her young son, three-year-old Alfie.
Nothing strange about a mother doting about her young family.
However, Gemma admits that back in 2012, she would have been surprised to hear herself say that.
After a traumatic first few weeks in this world, Alfie was diagnosed with Cystic Fibrosis. And the family faced into what they thought would be a lifetime of just hospitals, medication, physio and everything else that comes with having a ‘sick child’.
“I never thought it possible in the early days, but now CF is just a daily part of our lives,” she tells TheJournal.ie.
On 3 August 2012, Gemma and her husband were called into Crumlin Children’s Hospital for an appointment with a Dr Paul McNally. Consumed by worry and an uncomfortable curiosity, Gemma googled the name.
The result flashed back: “Paediatric Cystic Fibrosis Consultant/Respiratory Medicine.”
So by the time she got to the corridors of Our Lady’s Children’s Hospital, she knew her son was about to be diagnosed with Cystic Fibrosis.
“It was horrible and traumatic,” she recalls. “But we hope that because he started his treatment so early, it will stand to him in the future.
“You always wonder if they will manage to live a ‘normal’ life – and do all the things you want them to be able to do.”
Although he has had some “blips” over the summer with his health, Alfie is an active, playful toddler. He spends three full days in creche, likes painting, gardening, playing and baking.
His time in physio and on nebulisers helps him function at relatively normal pace.
“I have to remind myself that this is the ‘sick’ child, that a few years ago, I never felt I would be able to let out of my sight, whose life would be dominated by hospital admissions/visits and who would never be like all other children his age,” adds Gemma.
As well as having a close family network, Alfie’s mam has also turned to social media for guidance through her son’s condition.
She says, “Unfortunately, the cruel nature of CF means that direct interaction with other CF parents and their children”. (The risk of cross infection is too high).
But the Internet has really “come into its own” for the family.
“I can talk to people with such different stories on mothers’ forums who are at different stages of life. Some have children in school, others at college. I can ask them how they managed. It’s amazing to be able to speak to people with this experience.”
A helpful resource when trying to navigate normal sibling relationships. Alfie’s older sister is seven and coming to grips with the reality that her brother isn’t necessarily the same as her.
“We have had some periods of jealousy, and even when you believe you don’t treat one any different to the other it can be hard to be asked, ‘Why you don’t care as much about me when I cough, as you do when he does?’” says Gemma.
“It was difficult when he was born. The first month in Crumlin – she couldn’t see or touch him. That’s not a great start. But now she’s great with him. She keeps him company when he has his nebuliser and she’s very accepting.”
Again, Gemma mentions luck.
But according to Gemma’s father-in-law Terence, nothing about the Dardis’ family’s life is down to chance.
“They are just the most fantastic parents,” he says of Gemma and her husband Conor. “They do whatever it takes and they have seen that he has had the best possible start. I’m so proud of them. I would do anything for them.”
So that’s why he is “jumping out of a plane”, aged 73, today. As part of the family’s fundraising efforts for CF Ireland, Terence has taken on a skydive hoping to raise about €2,000.
“Alfie, if you met him, would just bowl you over. He’s magnificent,” he tells TheJournal.ie. “This is not about me. It’s irrelevant what I feel – scared, nervous, excited. I just want to be able to make sure that Alfie is getting the care and attention he needs.”
Terence says him and Alfie are great companions.
“He’s a typical little boy – if there is such a thing,” he says proudly. “He loves to play with cars and run around. If you just met him, you wouldn’t know he had CF. He has a real sense of humour, he’s very funny.”
“He’s done more for me – to lift my spirits – than I could ever do for him.”
To donate money to the cause, visit Alfie’s Army charity page.
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