Brave Ballyhea mother Brenda wins Carer of the Year award
Accepts accolade on behalf of carers across Ireland
"This award is not just about me and my husband. It's for all of the carers across Ireland whose efforts every day go unrecognised."
Speaking to The Corkman after winning the 2018 CarePlus Carer of the Year award, Brenda O’Connell Barry said she hoped to use it to raise awareness of the work done by and struggles of other carers across the country.
"The award is recognition for the work that Trevor (her husband) and I have done. But, far more important than that, I accepted the award on behalf of the thousands of carers across Ireland for their efforts that, all too often, are never rewarded," said Brenda.
"My aim now is to use this award to raise awareness of what carers do every single day, all too often with little or no support."
Brenda - who lives in Ballyhea, near Charleville - received the award for caring for her son, Fionn, who is believed to be the only person in Europe with the rare NACC1 genetic mutational condition.
The four-year-old has spent much of his life in hospital due to a condition that has left him visually impaired, and unable to walk, stand, or even sit unaided. Fionn is mostly fed through a peg tube in his stomach as he is not able to swallow properly.
He requires 24/7 care and can often cry for days on end due to the excruciating pain caused by a combination of severe cerebral agitation, violent retching and crippling muscle spasms.
Brenda herself suffers from the debilitating illness Systemic Lupus, undergoing chemotherapy treatment to relieve the pain, and also cares for her mother, who recently had a cancer diagnosis.
Both she and Trevor have devoted their lives to looking after Fionn and have not enjoyed a night out together since their son was born.
In fact, last Friday, when Brenda travelled to Dublin to collect the award prior to her appearance on The Late Late Show, was the first day that she has spent away from Fionn in four years.
Brenda said that all the couple want to do is provide a safe home for their son. To that end, the couple have raised more than €50,000 through the 'Fight For Fionn' campaign, which they hope will help them cover the expense of his long term care.
However, Brenda admitted that this amount was nowhere near enough to provide the kind of care and attention that Fionn needs.
For example, the oils he needs to help manage his condition cost €195 for a two-week supply. He requires almost daily private physiotherapy, and Brenda and Trevor's home needs adaptations costing tens of thousands of Euros to help mange Fionn's condition.
Brenda said that it is a constant struggle to secure the help and support she and Trevor need as Fionn's full-time carers.
"We feel there is no one to turn to, no support. Any bit of support that we have gotten, we have had to fight tooth and nail for. I must admit that, before I had Fionn, I had no idea of the lengths that carers have to go to get help," said Brenda.
"I was on my hands and knees before I got any help. It should not be that hard. There are so many services that are not available, and we need to fight continuously every day of the week," she added.
Brenda said she knew she could speak for carers across Ireland when she said they need all of the help and assistance they can get.
"While it was great to win the award, carers like us face a constant battle to get the help we need, and I hope to use this as a way to raise awareness of what we have to go through," said Brenda.
"This award is for all of the carers across Ireland whose efforts every day go unrecognised."
For more about the Fight for Fionn campaign and to donate to the cause, visit www.fightforfionn.com.