Ailín Quinlan talks to two parents who are battling to raise funds to treat the multiple rare illnesses afflicting their little boy Fionn Barry
THE notice on the door banning visitors who are ill or been in contact with someone who has is one indication of the stress under which Brenda O’Connell-Barry and her husband Trevor live.
The €35,000 the couple have managed to fundraise in a matter of little more than six months — their target is €100,000 — is another.
Their two-year-old son Fionn is extremely ill with what doctors have warned is a life-limiting condition.
A former playschool manager, Brenda, 35, now looks after Fionn full-time, while Trevor, 38, an electrician, resigned from his job last Christmas after the couple were told their child was not expected to live more than six months.
Day-to-day life is a nightmare for the couple, who live with their son in Ballyhea, a few miles from Charleville, North Cork.
Fionn has been diagnosed with a rare type of epilepsy as well as dyskinetic cerebral palsy and critical visual impairment, a condition in which messages were not being sent as normal from his eyes to his brain.
However, doctors are flummoxed by another, as-yet-undiagnosed condition which is limiting the growth of Fionn’s brain.
Brenda and Trevor have been on an exhausting emotional, financial and logistical roller-coaster since Fionn was born prematurely at 36 weeks in August 2014 in Cork University Hospital.
After spending a week under observation in the hospital’s neonatal unit, the baby was discharged:
“Everything seemed to be fine,” recalls Brenda.
He cried a lot, which the doctors initially put down to colic (which manifests in long episodes of infantile crying) and later to reflux, which is when milk the baby has swallowed comes back up into his food pipe or oesophagus.
Brenda was advised to stop breast-feeding, as it was felt that her baby was hungry because her milk supply was inadequate.
However, she recalls, although she tried different kinds of infant formula, nothing worked. The crying didn’t stop.
“He was crying for 18 hours a day at least. It was a very high-pitched crying, as if someone was ripping him apart,” she recalls.
“We were worried sick — and we couldn’t believe it was reflux.
“He had severe constipation and cried a lot when he was making a poo.”
Tests were carried out. The surgeon found a considerable fissure in Fionn’s anus which he believed, had been there for a long time and was causing severe pain:
“The doctor said that an adult would be in agony with it,” she recalls. “The pain would begin about three hours before a bowel movement, and continue during the bowel movement and for another hour after it — it was horrifically painful.”
At six months, Fionn was given an injection of botox which helped relieve the pain — but in all, he spent at least 10 months of the first year of his life in hospital.
He was later diagnosed with infantile spasms or West’s Syndrome, a rare form of epilepsy.
“He was put on very strong anti-epileptic medication and we were told that he’d never walk or talk or even sit up.”
Brenda spent week after week in the hospital with Fionn.
“He was always crying,” she recalls, adding that the medication also made him sleepy: “He went into a kind of fog with all the medication. He was ill most of the time and in and out of hospital.”
Around Christmas 2015, Fionn had a very bad seizure. An MRI showed that although he was well over a year old, his brain was the size of that of a six-month-old.
“The doctors didn’t know why Fionn’s brain was not growing and that’s our biggest worry,” says Brenda.
Doctors said his condition was life-limiting and that he might not live for more than six months.
“They said there was nothing they could be done for him, and advised us to take him home, make him comfortable and enjoy him while we had him. When Trevor heard this he gave up his job.”
The two-year-old is in constant pain, she says.
“He gets terrible pain and cramping in his muscles, and has to be bathed and massaged.
“He suffers a lot of pain.
“He had to be peg-fed because his swallow was affected. We were told that his condition was life-limiting.
Doctors explained to the couple, she recalls, that if Fionn was to get three serious illnesses — for example, three chest infections — in a row, it could kill him because of his poor health.
However, his parents noticed an improvement in his condition over last summer and, as a result, the number of drugs he’s on has been improved. He’s also started to eat some pureed food. “He started to improve. We’ve not had a hospital admission for six months,” says Brenda, who is now taking Fionn to alternative therapists for remedies such as bio-energy healing, reflexology and homeopathic medicine. He also attends a chiropractor and a physiotherapist.
Brenda and Trevor are also attempting to improve his cortical visual impairment through the use of fibre-optic lights, a light box, and other facilities.
“Because he’s doing well the level of drugs have been reduced and he is coming back to himself a bit.
“I think the treatments he’s getting are helping him, although I don’t know how.
“He had a test lately, for his swallow, and we’re now able to feed him pureed food although he still has to have a peg for liquids and medications.”
However, Brenda and Trevor still have to be very careful. Visitors to the house continue to be restricted.
“We have a sign on the back door saying to visitors that if they have been ill or have been in contact with someone who has been ill they are not to come in because they could potentially pass on a life-threatening infection to Fionn.
“Even a common cold, which would be nothing to an ordinary two -year-old could be potentially fatal for Fionn.”
Last May the couple launched a fundraising campaign to help defray the heavy costs incurred by Fionn’s plight — everything from the fees to be paid for the alternative therapies he receives, to the cost of transport to and from the hospital and a variety of much-needed renovations to the family home.
Although they get support from a HSE-supplied nurse who comes three times a week, and some weekly hours of support from the Jack & Jill Foundation, their regime is exhausting – and the costs are spiralling.
“We are currently fundraising to raise at least €100,000 to help build an extension to the house with two downstairs bedrooms, for Fionn and for us, as well as a wet-room.
“We also want to widen all the doors to allow for his wheelchair and remove a many steps as possible.
“We get no financial support for the alternative therapies, which are paid for from the fundraising campaign.”
To date, she says, the Fight For Fionn fund has reached €35,000.
“It’s very difficult. Every single day is torture.We have to do shifts caring for Fionn.
“When he’s agitated you cannot leave his side. Even the administration of the medicine is very difficult.
“Sometimes we feel more like two doctors treating him than his parents rearing him. We’d love to have some bit of normality back in our lives.”
For more information on Fionn, Brenda and Trevor’s fundraising campaign, find Fightforfionn on Facebook or visit www.fightforfionn.com To donate to the Fight for Fionn campaign, go to www.gofundme.com/FightforFionn.
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