The mother of little Mountmellick brothers Ben and the late Jake Connolly, both sufferers of a rare debilitating condition, says the government’s decision to automatically give very sick children medical cards is “overdue but welcome”.
Nicolette Connolly had to go through the stress of applying for a medical card for Ben and Jake,
Both were born with Allan Herndon Dudley Syndrome, which requires constant nursing care and medication, and allows for only a short life.
Little Jake sadly passed away from the condition last January while his big brother Ben battles on.
“Hospital costs and medication for precious little children like these can run into the hundreds heading for thousands. It’s an added stress that is just not needed. It should have always been there but at least it’s rectified now. It doesn’t make up for what some families have unforgivably been through, but hopefully it will ease the stress of families facing this in the future,” Nicolette told the Leinster Express.
Nicolette and her husband Terence had to give up work to care for their boys. She listed the financial outlays from caring for a very ill child or one with complex needs.
“You love them to the bone but such a huge emotional and financial burden comes with that, loss of working income, cost of travelling to and from hospital and other related expenses, trying to balance care of existing children, and the cost of extortionate medication,” she said.
Up to now, one in three very sick children in receipt of the Domiciliary Care Allowance did not get a medical card. Soon they will automatically get one, with an extra 10,000 children covered.
Laois TD and Minister for Foreign Affairs and Trade, Charlie Flanagan welcomed the change.
“I know from talking to local families that this will come as a huge relief to Laois families with very sick children. The government is going to bring legislation through the Oireachtas on this matter and hopes the changes can come into effect in the not too distant future,” Minister Flanagan said.
The Ben and Jake Connolly Trust Fund is raising money to build a house adaptable for Ben’s needs, and in time, for other families in a similar position.
The next fundraiser is a comedy night in Turley’s pub Mountmellick this Friday night July 29 at 8pm.
See Ben and Jake Connolly Trust on facebook or see www.benandjakeconnollytrust.com