CORK parents determined to get to the bottom of their son’s mystery illness have made a heartbreaking plea after learning that his condition may be life-limiting.
Fionn Barry from Ballyhea pictured at home with his mum Brenda O’Connell Barry and dad Trevor. Pic: Don Moloney / Press 22
Brenda O’Connell-Barry, who lives in Ballyhea, said that she and husband Trevor were told by medical professionals to “take their son home and enjoy him.”
She said: “We’ve been told that this is a life-limiting condition but nobody can tell us how long he has. All doctors keep telling us is to take Fionn home and enjoy him. My husband was working as an electrician which meant that he was out of the house from 6am to 6pm in the evening. However, when he heard this news he quit the job to spend as much time with Fionn as possible. We’ve been told that he will never walk but we’re hoping he’ll go on to prove everyone wrong.”
The couple hopes to raise €100,000 to adapt their home outside Charleville so Fionn can have the best quality of life that his illness will allow.
The toddler, who turns two in August, suffers from cerebral palsy, epilepsy and an undiagnosed condition that limits the growth of his brain.
His mother said he tends to cry a lot but doctors put this down to colic.
“We were told that he’d grow out of it and that he was doing well for a baby so premature,” she said. “He was actually crying 18 hours a day. Looking back I really don’t know how we coped with it all. At six months he was put on all these drugs for the epilepsy that sent him into this fog.”
Reflux was also a cause for concern.
“We tried every type of milk and took on board advice given to us by a nutritionist but the problem persisted,” said Brenda. “The idea that a seizure could result in irreversible damage is very worrying. Every time he spits up medication as a result of the reflux puts the fear of God into us as we realise that just one seizure could potentially result in irreversible damage to the brain.”
Fionn has undergone numerous tests to establish the cause of his restricted brain growth.
“His brain hasn’t developed at the normal rate for a child of his age. It’s currently the size of an average six-month-old which explains why he’s not hitting the milestones of other children his age,” said Brenda. “Doctors have done every test under the sun to find the underlying cause, but they have all come back as normal. All they can do is shake their heads. We are hoping to take him to the UK to see a developmental specialist but right now he is just too medically unwell to do any of these things.”
The parents are hopeful that renovations to their home can start soon.
“Since being told that Fionn won’t walk, we’re trying to raise funds to have the house specially adapted. Our hope is to get our own bedroom for Fionn so the nurse can stay with him at nighttime. Everything we need is set to come to a total of around €80,000. All we can do is hope for a miracle.”
The hidden cost of Fionn’s condition can often be a burden for the family. “Although much of Fionn’s medical expenses are paid for there are still a lot of expenses. A lot of the time We may have to unexpectedly bring Fionn to hospital in the middle of the night. In these situations we’ll have to eat out and all these costs can end up really add up.”
Fionn’s immune system is so weak that even coming in contact with someone who has been ill could threaten his life.
“Doctors told us that if Fionn gets three chest infections in a row he could pass away. We have to put up a sign on our door to let people know that they can’t come in if they have recently got over an infection.”
Fionn’s positive attitude keeps his parents determined.“When he’s not in pain, Fionn is the happiest little boy you could ever meet. He’s a fantastic little boy despite having such a rough start in life.”
To donate to the Fight for Fionn campaign, go to www.gofundme.com/FightforFionn.
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