Despite an increase in nursing hours by the HSE, the parents of two severely disabled boys in Mountmellick are still mostly coping on their own.
Nicolette and Terence Connolly are caring for Ben aged 5 and Jake, 7 months, in their small home in Mountmellick.
The boys have a rare incurable condition, Allan Herndon Dudley Syndrome, which means they will become increasingly brain damaged, cannot support their bodies and have severe epilepsy, with a short life expectancy.
Last month their parents detailed an intense 24 hour care routine, how their two storey home is unsuitable, and the difficulties in getting enough nursing support and equipment.
Since then the HSE gave them a chair for Ben, a bath aid for Jake, and 12 more hours of nurses a week, bringing them up to 50 weekday hours.
Not much has changed yet.
“Trying to get those hours filled is a problem. There seems to be a shortage of agency nurses. We have never actually had 50 hours yet. This week we only got 22. We had none yesterday, and none today,” said Nicolette last week.
Fundraisers have been arranged and donations are flowing in, including one from actor Colin Farrell.
“It was arranged by a colleague from Newbridge Credit Union. Colin rang him after and wished us good luck. We couldn’t believe it, we were totally shocked,” said Nicolette.
Ben and his parents also enjoyed a magical four days away in Disneyland Paris, thanks to the Make-a-Wish foundation, with Laura Lynn caring for Jake while they were away.
“It was great, Ben loved it, we never saw him smiling so much, he was mesmerised with the fireworks,” said Terence.
Local fundraisers include a ‘Night at the Dogs’ in Newbridge on June 14, tickets €10 from The Paintstore in Mountmellick and a Golf Classic on Friday June 20 in Portarlington GC, team of 4 €100.
Frankie’s hairdressers are holding a raffle for a year of free weekly blowdrys, while a Sale of Work takes place in the Owneass Hall on June 22.
Donate in Mountmellick Credit Union, a/c 11888. See Ben and Jake Connolly Allan Herndon Dudley Syndrome on facebook.
Make-a-Wish has no government funding and relies on donations.