Mother in budget cash plea to ease carers' plight
A mother struggling to find the money for specialist care for her seriously ill son has called for a significant improvement in financial aid for carers.
Brenda O'Connell Barry cares for her four-year-old son Fionn who had been spending "day after day with no sleep, screaming and screaming relentlessly, being completely distressed".
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Her brave struggle to ensure Fionn is receiving the care he needs was recognised with a national Carer of the Year Award last year.
Ms O'Connell Barry is backing Family Carers Ireland's pre-budget submission for a significant increase in allowances for carers nationwide to ease families' financial headaches.
Fionn is the only child in Ireland or Britain with the NACC1 genetic mutation. But the most effective relief for his constant suffering is privately funded neuro-development physiotherapy, his mother said.
Most of Fionn's painful condition was attributed to horrendous muscle spasms which were initially thought to be seizures.
"But since he has been getting intense specialist physiotherapy costing €75 an hour, it has alleviated the spasms almost completely," said Ms O'Connell Barry (38).
Fionn receives the treatment four times a week at his home in Ballyhea, near Charleville, Co Cork, thanks to a constant 'Fight For Fionn' fundraising campaign.
Ms O'Connell Barry and her electrician husband Trevor are in the process of buying a special P-Pod disabled armchair for €3,000 and a special wheelchair for €5,800. They cannot wait for the HSE to provide these because the long waiting time would result in serious back problems for Fionn, she said.
A lip-sync event in Charleville two years ago raised €30,000 for a badly needed specially-equipped extension to the family home. The couple now face a quest for a wheelchair-accessible vehicle.
Trevor works long hours to help make ends meet but his earnings put the couple over the threshold for many supports. It means they are not eligible for a county council grant for a ceiling hoist for Fionn.
The specialist physio treatment and equipment bought through fundraising means that Fionn's life span has been extended, his mother said.
Little Fionn has an HSE-funded night nurse five nights a week and has a medical card to pay for his many medications.
Ms O'Connell Barry suffers from systemic lupus, which affects her immune system, and has to undergo periodic treatment which leaves her very fatigued.
She said carers all around Ireland are struggling desperately with finances and the Government must take action to significantly ease their financial stress.
"State allowances eligibility should take into account the financial outgoings of carers, who have heavy financial commitments and should not be assessed on gross earnings," she said.
Catherine Cox, of Family Carers Ireland, said carers are suffering terrible financial hardship yet one in four providing more than 50 hours a week care do not receive Carer's Allowance or Carer's Benefit because of strict eligibility criteria which needs to be eased significantly.
"Their physical and mental health is being damaged by the fear of not having enough money in the future," said Ms Cox.
There is a 'Fight for Fionn' Facebook page and also www.gofundme.com/fightforfionn