'We call it a living grief': Mother opens up about five-year-old son's fatal condition
Due to his condition, Fionn must spend a lot of time resting as his muscles tire easily. Picture: Fionn Brogan Trust/Facebook
"Mammy, can I walk into school without my powerchair so today I can be like everyone else?"
As children around the country excitedly returned to school last week, Maeve Brogan's heart was breaking as her five-year-old son, Fionn asked her this question.
Fionn has Duchenne muscular dystrophy (DMD), a progressive muscle wasting disease that is 100% fatal. The condition means that every time he exercises or does any physical activity, his muscles are unable to heal themselves and grow.
In Fionn's case, his is a very rare type of DMD which predicts more severe outcomes at an earlier age.
The muscle weakness already affects his walking, climbing steps, balancing and other daily activities.
His power chair, which he got earlier this year, helps him to get around when his muscles get tired and also helps him keep up with his brother and sister when they go to the park to play.
But when he went back to school last week, Fionn just wanted to be like all the other children – just for the day.
"There are days when Duchenne can break your heart in two," Maeve wrote on social media.
As the condition progresses, it is predicted that the Fionn – who turns six next month – will lose his ability to walk by the age of nine.
At the age of 11 or 12, he will likely have considerable difficulty using his hands and arms.
Eventually, his lungs and heart will struggle to function independently and he will need help to breathe.
It was a "dark day" when he was diagnosed at the age of three, Maeve says.
"Your lives literally change, you become very, very trapped in your own grief. We call it a living grief," she told the on RTÉ Radio One.
"You have your child in front of you and you know your time is limited and you just don't know when."
The family try to "live in the moment" but with a future watching Fionn gradually losing his independence, it is a tough ask.
"Every night when I put Fionn to bed and he gives me a cuddle and a kiss, I think 'When is going to be the last time he can raise his arms to me? When will be the last time that he can raise his head to give me a kiss by himself without needing help?
"So, every September is really tough. You see the gap widening. You see Fionn struggling more.
Along with the usual school items, Maeve packs Fionn's rollerbag with calming fidget toys for when he gets overwhelmed, a bottle he can drink from hands-free for when his arms get tired, a pain chart and a heat pack for when his muscles cramp.
This is the extra thought and preparation that needs to go into every aspect of Fionn's life.
The family is currently moving from a two-storey home to a modest bungalow to allow Fionn more freedom of movement as the muscles in his legs weaken.
Their new home will need to be adapted to suit Fionn's current and future needs. It needs to be fully wheelchair accessible, they will need hoisting equipment, ventilators and more.
The Fionn Brogan Trust was set up to be proactive in limiting the barriers he will be faced with throughout his life and they are currently hoping to raise €200,000 to adapt the family's new home.
As part of a campaign #30DaysOfFionn, people have done triathlons, walks across Ireland and crazy hair days to help raise funds and more than €75,000 has been raised so far.
"We have a magic team. My family, Michael's family have all come together and they said to myself and Michael: 'You take care of Fionn and do your best and we will take care of this'.
"My God, the weight that was lifted off our shoulders was massive and I don't think they will ever understand what it means. It gives us hope when you feel like there is none."
Fionn, meanwhile, is looking forward to his birthday in a few weeks. Like many children his age, he is a massive superhero fan and will get to enjoy a superhero-themed cake at his outdoor celebration.
Maeve describes her son as being a charmer who loves the outdoors and getting up to a bit of craic and mischief.
He loves playing with his siblings, Daniel and Greta, playing football with his friends, swimming and playing pranks. He can get frustrated when his body gets tired and he can't do the things he wants to do but he carries on and hasn't lost his spark.
"Fionn knows he has Duchenne. He know that that means his muscles get very tired. That he has to do a lot of physio every day. He has to wear his splint at night, he has to use his powerchair.
"It means pain. It means being left out an awful lot."
When he gets frustrated, his parents talk with him and explain what is going on in a way that he can understand. These types of difficult conversations will continue as he gets older.
"Real difficult conversations will happen further down the line when we have to explain to him that when he loses his mobility in his legs.
"We will eventually have to have that awful conversation that I have nightmares about telling him that this is going to kill him.
"That is a conversation that we dread. Absolutely and every parent dreads because there is no magic wand that we can wave for this. We can't, you know, put on a plaster and make it all go away."
While they can't make his condition disappear, Fionn's family are doing all they can to help to make his life as easy and enjoyable as they possibly can.
If you would like to donate to the Fionn Brogan Trust or learn more about Fionn and DMD, you can visit the website here.
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