'My arms and my heart are empty': Mum keeping Fionn’s name alive

Mum Brenda O’Connell Barry opens up to CHRIS DUNNE about the loss of her beautiful son Fionn, aged seven, and how she and her husband are picking up the pieces and keeping his memory alive
'My arms and my heart are empty': Mum keeping Fionn’s name alive

Fionn Brenda O’Connell Barry and her husband, Trevor with their son Fionn

EVEN though Brenda O’Connell Barry and her husband, Trevor, have lost their beautiful precious boy, Fionn, he is still very much in their lives and he’ll always be a guiding light for them.

“We are a team,” says Brenda, who is grieving for her seven-year-old son who passed away on September 10.

“Fionn passed away in the loving arms of his mammy and his daddy,” says Brenda.

“We came home from the hospital at 12.15 and Fionn died at 6.15 in both our arms. We miss him so much around the house. His room is so empty, so silent. My arms and my heart are empty with the void Fionn has left.”

He will never be forgotten.

“Trevor and I will now continue the Fight for Fionn, helping other families who find themselves in the same situation that we did, having to fight tooth and nail for any bit of help we got,” says Brenda.

“We want to heighten awareness of the wonderful and, very often, the hard work carers have to do with very little support from the HSE. I feel very strongly about raising awareness about carers’ situations. It is like ticking a HSE box as to how much suffering they have to go through. The lack of support is terrible and caring full-time for a loved one can be exhausting. Not everyone has the strength to go out publicly and say what they need.”

Brenda is a fighter, like brave Fionn was.

“Everything was a fight for us, which was very hard as we were already in a difficult situation caring for Fionn who had a life-limiting condition,” says Brenda.

“We knew we hadn’t our boy forever and the health professionals knew that too. We’d hoped the HSE would step in as soon as possible to get Fionn the care he so deserved. He was so precious. He was minded to within an inch of his life.”

Brenda and Trevor dedicated their lives to Fionn.

“We chose to fight for our precious boy who needed around-the-clock care. We put our hearts and souls into caring for Fionn.”

He felt the love of his parents, his friends, and his family who tirelessly supported him and fund-raised for him.

“We are so lucky with the caring community we have,” says Brenda.

Brenda O’Connell Barry and her husband, Trevor with their son Fionn
Brenda O’Connell Barry and her husband, Trevor with their son Fionn

“Our friends and neighbours were a great support to us. Our friends fought for Fionn and they supported our campaign. They rowed in when we needed them most.

“Fundraising can be so difficult. People in the community and wider community, from Charleville, Milford and Ballyhea; they were all there for us.”

Fionn defied the odds.

“We were told he wouldn’t see the age of two. He lived to be seven years old,” says Brenda.

“Fionn was a little fighter but he just couldn’t keep on going. He was our amazing beautiful boy.”

The couple were told something else when Fionn was born.

“When he was undergoing an ECG to check his heart, the doctor said he had a very strong heart,” says Brenda. “The heart of a lion! Fionn was our lion-hearted warrior.

“I remember when we were expecting him, we were so happy, so overjoyed. When he was born he was a perfect little boy. Everything about him was so lovely. He suffered horrendously, so much more than any little boy should have to.”

Brenda suffered too.

“Fighting for support for Fionn from the HSE nearly gave me a nervous breakdown,” she says. “It was so draining and it made everything that much more difficult. I couldn’t fathom it.”

But help was at hand.

“Fionn had a great medical team in the Puffin ward in CUH and his consultant, Dr Gibson, was amazing,” says Brenda.

“There was nothing she would not do for us. She advocated on our behalf to the HSE. Fionn’s condition was so complex, she knew how hard it was for me to care for him.”

Fionn’s care nurses helped Brenda care for her son.

Fionn sadly passed away aged seven
Fionn sadly passed away aged seven

“They were outstanding,” she says. “And so was Tyrone, Fionn’s life-limiting nurse. They all tended to Fionn with love and care. Family Carers Ireland were very good to us. It was so important to us to keep him at home. ”

Fionn was dark-haired and he resembled his mother. I remember when I met him at the age of two, I was mesmerised by his deep expressive eyes that framed his face and his magnificent sweeping eye-lashes.

“Everyone said he had beautiful eyes,” says Brenda, who won the national Careplus Carer of the year in 2018, which was the only time she spent a night away from Fionn.

Her son was born on August 6, 2012, and was diagnosed with an extremely rare genetic condition, NAC1, the only person in Europe diagnosed with it. Lion-hearted Fionn spent weeks and weeks in hospital.

“He would cry for hours and for days,” says Brenda, who misses her little boy’s presence so much at her home near Charleville.

“We were advised to take him home and make him comfortable and enjoy him while we had him,” says Brenda.

The couple did just that, and they did so much more.

“When Trevor heard that, he gave up his job.”

The couple fundraised more than €50,000 to build an extension to their bungalow for their son, which previously only had one bedroom.

“It is the people of Cork who helped us to fundraise for Fionn’s campaign,” says Brenda. “We are so grateful to have had the best possible support from the care nurses and from our family, friends and neighbours.”

Brenda and Trevor have good people around them.

“Our neighbours come and check on us to see if we’re alright. We got kind offers of breaks away, it is too soon yet. But it would be fabulous to get a break away. Trevor and I can re-discover each other, we were often like ships in the night when we were caring for Fionn.”

Fionn’s late Nan was around to help the family.

“She’ll be gone three years in February,” says Brenda. “We miss her so much. In later years, when she wasn’t well, she couldn’t hold Fionn.”

She made her presence felt though.

“When we came from the hospital, Mammy always had a casserole ready,” says Brenda.

“She’d have the bags unpacked and a wash on straight away. Daddy is 76 and he hasn’t been well either. He’d always collect prescriptions at the chemist and make me tea, he was a great help with those kind of things. When Fionn cried, Daddy would take him up on his lap.”

Everyone adored Fionn.

“Yes, everyone loved him,” says Brenda. “He was always laughing and smiling when he wasn’t in pain. Fionn was the happiest boy you could meet. His little smile kept us going.

“Now Trevor and I have each other and we know we’ll keep going for Fionn, creating a legacy to help others on their journey. It will help us to carry on every day and give us the strength to do so.”

Fionn touched people’s hearts everywhere.

“When he passed away, we got cards from all around Ireland, from the UK, from Canada and the USA, all from people who followed his journey,” says Brenda.

“I have a big box of cards and there were so many messages of condolence on rip.ie for our beautiful boy. He touched so many people. We want to keep his name alive.”

Brenda and Trevor now want to support others.

“There is a huge waiting list for wheelchairs,” says Brenda. “Hopefully, Fionn’s wheelchair can help some families who are waiting and their child can have access to school sooner. We’ll do the same with all Fionn’s equipment. We have a family we know selected to take his ceiling hoist. All the equipment is so expensive and we know families would be glad to avail of Fionn’s equipment; it will help alleviate their hardship.”

Fionn’s legacy will continue.

“We’ll continue to fundraise in Fionn’s name,” says Brenda. “I open my eyes and I get up every day. I’m driven in the fight for others and to keep Fionn’s name alive. It is our way to give back to the community that helped us. It is so important.”

Brenda has the heart of a lion.

”I have to be strong and I have to be strong for Trevor. Fionn is gone now,” adds Brenda. “We did everything we could and we are so grateful for all the help that was given to us to lovingly and so willingly. I’ll never forget it.”

You can follow the family at Fight for Fionn on Facebeook.

“We are a team and we’ll keep fighting for Fionn and for others.” ENDS

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