Brenda O’Connell-Barry lives in Charleville, Co. Cork with her husband Trevor and their young son Fionn (5) who has NACC1, a rare genetic mutational condition. Fionn is the only known person in Europe with this diagnosis. Having become extremely ill at three months old, he spent the first two years of his life in and out of hospital. He stopped feeding and would cry for up to 20 hours a day in excruciating pain, leading to a nasal gastro tube and PEG feeding.

Brenda and Trevor refuse to give up hope for a day when Fionn doesn’t suffer. Brenda has a highly debilitating illness called Systemic Lupus and has undergone chemotherapy treatment to alleviate the pain. Despite all of the challenges the family faces, they have managed to fundraise locally to adapt their home in order to make it suitable for providing 24/7 care for Fionn.

Brenda says the lack of support from the State has been very hard to stomach:

“The financial burden on us is huge. My husband has a job, he works very hard. He’s an electrician so that means that we don’t qualify for any grants. We have a huge network of people that help us to fundraise.”

Brenda, who was our Carer of the Year in 2018 and continues to be powerful advocate for all family carers, describes Fionn as a very special little boy:

“He has a way with people and I think once you meet him and connect with him, you’ll never forget him”.