Ahead of a fundraising event this weekend, CHRIS DUNNE talks to the parents of an ill two-year-old boy, Fionn Barry, from Ballyhea
FIONN Barry has the heart of a lion.
“When Fionn was undergoing an ECG to check his heart, the doctor said that he has a very strong heart,” says his mother, Brenda O’ Connell Barry. “The heart of a lion.”
The youngster, who turned two on August 6, is ill with a life-limiting condition. Fionn has been diagnosed with cerebral palsy, epilepsy, and an undiagnosed condition that limits the growth of his brain.
“This time last year Fionn had an MRI after suffering a very bad seizure,” says Brenda. “The doctors didn’t know why his brain was not growing and that is our biggest worry. We were told to bring him home, make him comfortable and just enjoy him,” says Brenda.
But with Fionn’s positive attitude and his parents’ determination, the little lad visited Santa this year and he had his second Happy Christmas with his Mum and Dad, at their home near Ballyhea village.
“Fionn got a tricycle and painting stuff,” says Brenda.
“He is always laughing and smiling when he’s not in pain. He is the happiest boy you could meet.”
The first thing that I notice when I meet Fionn is his magnificent long, thick eye-lashes that frame his big expressive eyes.
“They are fabulous,” agrees Brenda.
Fionn is contented in his baby bouncing chair listening to the familiar sounds of his parents’ voices. His favourite teddy bear is clutched under his arm.
“The teddy bears are his friends,” says Brenda.
Fionn is enamoured with the lovely Christmas decorations, adorning his home.
“He loves the Christmas lights,” says Brenda. “Especially the flashing lights. His cortical visual impairment can be improved with the aid of fibre-optic lights and a light box. Dr Chen at Barrington Hospital in Limerick is very positive that it can be reversed. I noticed the other day when his Granddad walked across the room to the press; Fionn was following him with his eyes.”
His Mum and Dad have to be careful with visitors for fear of infection.
“It was explained to us that if Fionn got three serious illnesses in a row, for instance, three chest infections; it could be fatal for him,” says Brenda.
The couple’s day-to-day lives are taken up with their only son’s care.
“Our main aim now is to get the work done on the house so that it is totally suitable for Fionn and adequate for his needs,” says Trevor.
“People are very supportive. Tradesmen have offered us their services. Hopefully we’ll get going with the building in the summer with everybody on site. Our house now is like a storage house. It is filled with Fionn’s stuff. We need a bigger sitting room to accommodate a wheel-chair. Fionn needs to have the run of the house. The tracks for a hoist must be put in place in the event of Fionn getting bigger and heavier. We have to plan for that. Our goal is to hang on to him for as long as we can.”
Fight for Fionn was launched in May. The fundraising campaign will help pay for the adaptations to the cottage; a custom-built wet room for Fionn and a fully adapted bedroom.
“I sleep on the couch with the baby monitor up to my ear,” says Trevor.
“I can hear and see every move that Fionn makes. It’s a roll of the dice if we get any sleep at night. He is a very light sleeper.”
Brenda, a day-care centre manager, and Trevor, who is an electrician, both gave up their jobs when they learned the extent of Fionn’s life-limiting condition.
Fionn has spent most of his short life in hospital.
“I could hear him crying all the time in the ward,” says Brenda.
“For every tooth; it was two weeks in hospital.
“He had a fissure in his bowel, and a hernia removed. He has had multiple biopsies.”
Brenda and Trevor are doing everything in their power to help their beloved son.
“We hope to prove the doctors wrong,” says Brenda.
“We are not going down the road of losing him. We are not accepting that we mind him for now and then let him go. No way.”
Fionn weighed in at a healthy 7lbs 3 ounces when he was born.
Even though Brenda had a cord prolapse, where the cord comes out of the uterus with, or before presenting part of the foetus, she was told her new-born son was perfect.
“His stats dropped, yes,” says Brenda. “But we were discharged from the hospital with a clean bill of health. He had been fed fluids through his nose,” says Brenda. “I started breast-feeding him.”
But while Fionn was the picture of health, it was clear that something was badly amiss when he cried for hours on end.
“He could cry for up to 18 hours,” says Brenda. “Looking back, I wonder how we ever coped.”
The young parents were at a loss to know what to do.
“We sensed an odour like something acidy,” says Brenda.
“And Fionn suffered a lot of reflux. His discomfort was put down to colic. I was advised to stop breast-feeding and we experimented with different formulas, most of them for lactose intolerant babies.”
One of the formulas, Neocate, had the best success.
“We settled on that. But it wasn’t ideal,” says Trevor.
Trevor had been reared on goats milk. It was worth a try.
“My Dad had goats,” says Trevor. “We drank a pint a day. The goats milk seemed to agree with Fionn better than other types of milk.” But the incessant crying continued.
“We didn’t believe it was just reflux,” says Brenda.
An X-ray showed that some of the milk Fionn was swallowing was going back into the food ‘pipe’ or into his oesophagus. He lost his ability to swallow.
“When Fionn went on solids, we had to make sure that the food was ‘gloopy’ enough to go into this stomach. If it was too wet, it went into his lungs,” explains Trevor.
“Fionn was growing, but not gaining weight.”
But there was something else. Their baby son seemed to be in constant terrible pain.
“Fionn suffered severe constipation and when he was making a poo he cried in desperate pain,” says Brenda.
“The pain would start three hours before a bowel movement and continue for another hour afterwards,” says Brenda. “It was horrific.”
At four months Fionn had a hernia operation. But his plight didn’t improve.
“I knew that Fionn held on to his poo, because it was too painful for him to pass it,” says Brenda.
“He was straining for ages and his little body was in spasm with pain. When tests were carried out, it was discovered that Fionn had a laceration in his anus which was there for some time.”
It was heart-breaking for Brenda and Trevor to see their child in such agony.
When Fionn was six months, he was given an injection of botox to stop the pain when his muscles opened.
“It helped to relieve the pain,” says Brenda.
But it took two months to work and for Fionn’s little bottom to heal itself. All in all, Fionn spent 10 months in hospital.
The little lad was later diagnosed with infantile spasms, a rare form of epilepsy.
“Fionn was put on a very strong dose of anti-biotics,” says Brenda.
Brenda and Trevor braced themselves.
“We were told that he would never walk or talk or even sit up” says Brenda. “And that he’d never go to school. We sat there with our mouths open.
“I spent week after week with him in hospital. He was always ill and in and out of hospital. The medication made him sleepy but he was always crying.”
Christmas 2015 was a testing time for the Barry family when Fionn suffered a particularly bad seizure. The lad was over a year old but an MRI scan showed that his brain was that of a six month old.
“The doctors were baffled as to why Fionn’s brain was not growing,” says Brenda.
“That was a huge worry. We were told that Fionn might not live for more than six months and there was nothing more could be done for him.”
But his parents decided they could do a lot for him.
“He started to eat some pureed food, like prunes and figs,” says Brenda.
“We noticed that the crying bouts had longer intervals between them. The therapies we had started were definitely helping him. The medications decreased.”
A lot of dedicated hours went into helping Fionn thrive.
“His muscles need to be bathed and massaged regularly. He has to be peg-fed because his swallow was affected.”
The improvement was slow but obvious.
“We know him better, so he was responding better,” says Brenda.
“We give him organic food and all natural foods like organic salmon, fish and semolina,” says Brenda. “There are no toxins.”
What’s Fionn’s favourite dinner? Brenda smiles.
“He likes chicken casserole,” says Brenda. “And I can see his eye-brows lifting with delight when he gets a chocolate treat.”
Fionn has a good team around him.
“I had met Timo, who is a nutritionist, a herbalist, and a homeopath. Fionn is responding well to treatments. His physio-therapist, Chellappan, is optimistic for him. St. Joseph’s in Charleville are marvellous to us. Fionn goes to playschool and music therapy there. Child Vision in Cork is a great support.”
Every day is accounted for. The white board in the kitchen is filled up for every day of the week. Brenda takes Fionn for bio-energy healing and reflexology treatments.
“We have a HSE nurse assigned to us who comes in from 11am to 7pm three nights a week, “says Brenda.
“And we avail of the Jack and Jill hours where we add on an extra hour either end.”
Fionn’s care is a 24 hour job. Seven days a week.
“We are always on edge,” says Brenda. “It’s a waiting game. It is important to stimulate Fionn and keep him healthy. Hopefully he’ll turn a corner.”
Trevor is planning to go back to work in 2017.
“Then we could afford more therapies for Fionn,” says Trevor.
“I work in Shannon. But I may get work closer to home.”
The Barrys would welcome some semblance of normality.
“When Fionn is good; we do things,” says Trevor.
“We take it in turns. Brenda might get her nails done or do some shopping. I may get to the gym. We never go out together.”
Every day that Fionn is responding is a good day.
“Every morning first thing; is he OK today?,” says Trevor.
“If there’s no reaction, we know something’s wrong.”
“But you know, no matter how bad things are, there’s always hope,” adds Brenda.
“My mother lights candles in the church for us. She says God is good.”
The neighbours know things are OK.
“Sometimes they can hear Fionn screaming from across the way,” says Brenda.
“They say; he has mighty stamina. Fionn has more stamina than the two of us put together!”
And their son has a mighty heart.
He got that from his parents who continue to fight for him.
HOW YOU CAN HELP
A Charity 5k takes place this Sunday, January 8, in aid of Fight for Fionn. Start and finish at Sandpit House pub, Dromagh.
Registration from 12 noon. Adults €10, Children €7.
There will be a raffle for everyone who registered, refreshments, kids disco and phone booth.
Or to donate to Fight for Fionn, see www.gofundme.com
Or donate to Bank of Ireland Charleville. IBAN IE64BOFI90569470539327 Bic BOFIIE2d Re:Trevor Barry & Brenda O’Connell Barry Fight for Fionn.