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Cork mother named 2018 Carer of the Year

Update 2.07pm: A Cork mother, whose son has a rare genetic condition, has been announced as the Carer of the Year.

Brenda O’Connell Barry from Charleville in Cork cares for her 4-year-old son Fionn who suffers from NACC1.

It is a condition which means he requires 24-hour care and suffers from cerebral agitation and can scream for days with pain.

Brenda and her husband Trevor was told he would only live until 2 years but through her hard work he is now 4-years-old and doing well.

Brenda has a highly debilitating illness called Systemic Lupus and has undergone chemotherapy treatment to alleviate the pain.

On top of caring for Fionn, she also cares for her mother who has recently had a cancer diagnosis.

Despite all of this, Brenda managed to fundraise locally to adapt their home in order to make it suitable for providing 24/7 care for Fionn.

Brenda says winning the award means the world to her family.

"It's huge. We do so much for him and you get no thanks. You get no recognition from anyone," said Brenda.

"We just feel so isolated and so alone in caring for Fionn.

"We feel there is nowhere to turn. There's no support. Any bit of support we have gotten we have fought tooth and nail for it.

"The bit of nursing support that I had, I actually nearly had to have a nervous break down to get it."

She added, however, that when she sees Fionn smile, it makes everything worth it.

"When he smiles, it just...we might be after 10 of the worst days of all time and if we go into him in the morning and he smiles out to us we know it's going to be a good day and we've forgotten the last 10 days."

There were also five winners of the regional Young Carer of the year.

In Munster Harry, 13, and Molly, 11, look after their sister Isabelle Flynn. She has Cerebral Palsy and Apnoea which causes her to stop breathing.

Harry and Molly are trained in CPR and they have saved her life on numerous occasions when she stopped breathing.

In Leinster, 10-year-old Sean Ryan helps to care for his twin brother Liam. He has severe Quadriplegic Cerebral Palsy and as a result is a full-time wheelchair user.

The twins have a really strong bond and Sean knows the signs when Liam is getting upset or is feeling unwell. He is great at educating his friends about Liam’s condition.

Alanna Connolly, 17, is from Athenry was the Connacht/Ulster winner. She helps care for her twin sister Leah who was born with an undiagnosed rare syndrome.

At birth, doctors told the family they did not know what the future held for Leah, whether she would ever walk, talk or her life expectancy.

Alanna helps her sister and supports her when learning new things. Their mother Dawn nominated Alanna to say thank you to her for her patience and kindness over the last 17 years through some difficult times.

The Dublin winner was 14-year-old Shauna Tighe who helps care for her helps to care for her brother Daniel, 11, who has Sotos Syndrome.

The condition causes severe intellectual disability, epilepsy and a sensory processing disorder and Daniel is also non-verbal and incontinent. Shauna has been helping her brother since she was six.

Shauna helps out with bathing, feeding and helping to get Daniel up and down the stairs. Daniel wakes at 3am most nights and Shauna will often get up and help her mother with him as he requires two people to care for him due to his size and behavioural difficulties.

Carers from age 10 to 77 recognised for dedication and sacrifice

27 carers from across the country have been recognised for their dedication and sacrifice.

The carers who range in age from 10 to 77 have been awarded at a ceremony in Dublin.

13-year-old Harry and 11-year-old Molly Flynn from Kilkenny are trained in CPR to help their younger sister Isabelle who has cerebral palsy and apnoea.

Harry says they know what to look our for if their sister isn't breathing.

"You can see her mouth going blue at first. That's how you indicate she's stopped breathing," explains the 13-year-old.

"When she's crying she squeals and then she stops. Her lips go blue from not the right amount of oxygen.

"And then we have to tap her foot to try and bring her back and shout 'Isabelle, breath. Breath'

"Sometimes that doesn't work so when you just blow into her mouth it gives her the right amount of oxygen to come back."

Another carer, Brenda O’Connell Barry, from Charleville in Cork minds her 4-year-old son Fionn.

He is the only boy in Europe with a rare genetic condition called NACC1.

His parents were told he would only live until 2 years but through Brenda’s hard work he is now 4-years-old and doing well.

She said: "When he smiles, it just...we might be after 10 of the worst days of all time and if we go into him in the morning and he smiles out to us we know it's going to be a good day and we've forgotten the last 10 days."

Family Carers Ireland says today is about recognising and putting a value on the work the 350,000 carers nationwide do every day in their own home.

- Digital Desk