“WE love him more than the sun, the moon and everything in the world,” says Brenda O’Connell Barry, who was named national Carer of the Year 2018, for the love she lavishes on her four-year-old son, Fionn.
“The acknowledgement was great, “says Brenda, who lives in Ballyhea.
“It was bitter-sweet, if you like. When all the hype is all over, you come back home and you continue the same as you always did. You still have to cope with many things.”
But Brenda doesn’t want things to stay the same for the carers of Ireland, who work tirelessly, day in, day out, on behalf of others in their care.
“I’d like to help other people in our situation, who are financially under pressure to access vital therapies to help their loved ones,” she says.
“Everyone is struggling and they need support. But they are not getting it.
“We are humiliated to have to fund-raise for Fionn. But we can’t provide what he needs. Unfortunately, there is so much that he does need.”
Vital therapies for Fionn can prove expensive.
“Private therapies like occupational therapy, physiotherapy, and speech and language, are very expensive and the waiting lists with the HSE to access these therapies that can make such a difference to children like Fionn, are endless,” says Brenda.
“Every day we work so hard,” adds Brenda, who gave up her full time job as playschool manager to care for her son.
“Then we get knocked back. The financial pressure on families is really difficult in trying to access therapies.
“We do our best to pay for private treatments for Fionn. The emotional pressure can be immense,” says Brenda.
“We were very lucky we got support from the Jack and Jill Foundation for the last four years. It can be hell on earth. They took us out of the darkness.”
Fionn, aged four, was born prematurely at 36 weeks. He is one of only nine people in the world and only one in Europe born with an extremely rare illness.
The neuro-developmental disorder, NACC1, can cause severe epilepsy. Fionn is given liquids and his medications through a tube to his stomach because he has difficulty in swallowing. He can’t stand, talk, or walk. His cortical visual impairment is improving.
“He follows his grandad across the room with his eyes,” says Brenda. “I notice that a lot.
“Dr Chen at Barrington Hospital, is very positive that Fionn’s eye condition can be reversed,” says Brenda.
The first thing I always notice when I meet Fionn is his magnificent long eye-lashes that frame his big, expressive eyes. And he has a beaming smile that lights up even the dullest of days.
“He is always laughing and smiling when he’s not in pain,” says Brenda. “He is the happiest boy you could meet.”
The little lad knows how much he is treasured by his family.
“Fionn knows how much we love him,” says Brenda.
“He cuddles into us and he grabs hold of my finger and holds it as tight as he can.
“The doctors were saying at 12 months; he wouldn’t see two. We were told to bring him home, make him comfortable and just enjoy him,” says Brenda.
Brenda and Trevor did so much more, dedicating themselves to their precious son.
“Every day we are mesmerised how he’s surviving. The agitation is the worst,” says Brenda.
“We think it is cerebral agitation in his brain. Fionn can often scream for days, sometimes for nine days at a time and nothing helps. Now, he is getting bigger and stronger, it is difficult for me to manage him on my own. He fights against me when he is super-agitated.
“Next year we have to continue fundraising to get a ceiling hoist for Fionn and a wheel-chair-accessible vehicle. Our extension here at home is finished and it’s great to have the extra room. We needed room for his puck! That’s how someone we know described the space we needed.
“This Christmas, we can all sit around the table together with my mam and dad, who were both ill during the year. They are well now. And the extra space for the Christmas tree is great!”
Fionn thinks it’s great too. He loves watching the twinkling fairy lights on the tree magically change colour.
“The whole community helped us out with the new build and the credit union lent us the money we were short,” says Brenda.
“We were very lucky. Yes, we have to pay the money back. Trevor, my partner, works around the clock, putting in long shifts.”
Fionn, like his name-sake, is a mighty warrior, and like his parents, who mind him 24/7, he has a strong heart.
“When Fionn had an ECG to check his heart; the doctor said he had the heart of a lion!”
This Christmas, things will be different.
“Fionn spent two Christmases in hospital and two Christmases screaming,” says Brenda.
“We were never able to sit down to our dinner. One of us would have to rock him on our lap to try and placate him. We took it in turns to try and eat.
“Fionn can push in to the dining table with us this year. We can all sit down together and enjoy each other like every other family.”
Santa will be making a trip to Ballyhea, no doubt?
“Without a doubt!” says Brenda. “The letter is sent and the list is long!”
Brenda has her own wishes for the New Year and for the future.
“We are only an ordinary couple,” she says. “We have a mortgage and bills to pay like any other family. We have no spare cash to buy things for Fionn. We rely on fundraising and the continued support in the Fight for Fionn.”
They are not alone.
“All the carers of Ireland are in the same boat,” says Brenda.
“Let’s hope we can get more support in the year ahead.
“Fionn is the most amazing little boy,” adds Brenda, proudly. “When he smiles, he is a ray of sunshine that lights up our lives. It is so fabulous when he smiles. We love him so much.”
For more on the family’s fundraising efforts, see Fight For Fionn on Facebook