‘No family should have to put down the seven-years we went through’
THE heartbroken parents of Fionn Barry, the Ballyhea boy who defied all the odds to live beyond his seventh birthday despite suffering from the rare NACC1 genetic mutation condition, have vowed to ensure his memory lives on by advocating for other carer families in desperate need of help.
Fionn, who sadly passed away in September, was unable to talk or walk and was only able to eat by mouth during the final weeks of his short life, was totally dependent on his loving parents Brenda and Trevor who cared for him 24/7.
In a moving interview with Patricia Messenger on her C103 Cork Today radio show, Brenda spoke candidly about the seven-years she and Trevor spent with their “most beautiful, precious, special little boy” and the struggle they endured to secure the help they so desperately needed as his full-time carers.
Brenda spoke about how medical experts had said Fionn would be fortunate to live to his second birthday and the incredible support they received from the local community, to help make their sons life as comfortable as possible.
“He (Fionn) was so safe and loved. None of that would have been possible without the support of family, friends, the local community and people far and wide who supported us and donated to the campaign to get Fionn the help and specialist equipment he needed.”
However, Brenda said the fact that she and Trevor had to go down the fundraising route to secure the help and equipment they needed for Fionn was frustrating, saying that the HSE made it “so difficult” for them along the way.
“Your life as a mother and a carer was hard enough without having to battle to get the basics for Fionn. Fighting the HSE was one of the most exhausting parts of Fionn’s Journey,” said Brenda.
“And, I am not finished fighting for family carers and for families like us. This is only the start. I intend to keep going, to keep fighting for other families in Fionn’s name and his honour,” she pledged.
Brenda said Fionn could often stay awake for up to nine-days at a time screaming in pain and that the constant worry took its toll on her own health, due in no small measure to the sleep deprivation she was experiencing.
“Fionn was going through so much. Trevor and I thought that if he can endure this, we can keep going and stay strong for him. Although, it did send us to the bring of despair and back so many times,” said Brenda, who admitted the constants demands on her time combined with the lack of sleep almost caused a mental breakdown.
“No family should have to put down the seven years that we had to go through. There needs to be more support, there needs to be so much more help. I don’t know how we got through it, not to mind losing Fionn in the end,” she added,
Brenda said what carer families have to go through just to get that basic support beggared belief and that while consultants, the school and the St Joseph’s foundation advocated “tooth and nail” on their behalf highlighting how complex Fionn’s needs were, the HSE was not as forthcoming
“The HSE make it so difficult for us all along. It is so devastating to seek help and then come across these people who are in an office somewhere ticking a box and then to be told your child does not meet the criteria for help,” she said.
“Eventually, we did get the kind of help we so badly needed for Fionn, but were only able to avail of it for a fortnight before he passed away.”
To add insult to the hurt and pain the family were going through, Brenda received a call from a HSE official a week after Fionn was laid to rest saying they were coming to collect his wheelchair, bed and seating system.
Brenda pointed out to the caller that the bed and seating system were the only two items provided to the family by the HSE, with all of the other equipment Fionn needed provided by Family Carers Ireland or through fundraising.
“I said sorry now, you did not even five us €2 towards the wheelchair, so you certainly won’t be getting that back. She said oh right, was there anything else and I replied yes, your condolences for the loss of my son would not go astray. She just went silent and these said ‘oh yes, of course, obviously yes’,” said Brenda.
She said the family would be donating all of Fionn’s specialist items to other families in need of it in order “to spare even one family that torture of having to advocate and fight for equipment”.
She said this and her continuing fight to advocate on behalf of other carer families would be Fionn’s legacy.
“We lasting are to try to keep his name alive as much as we can. Keep him in peoples minds and just remember the beautiful, beautiful special precious little boy we had and the seven-years we gave him with the help of so many people,” said Brenda.
“He really was a miracle and we were so blessed to have had him.”