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"They're handing back the keys, and they have nowhere to go"

According to the latest figures, there are more than 4,000 people across the country living in em...
Newstalk
Newstalk

11.56 3 Jul 2015


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"They're handi...

"They're handing back the keys, and they have nowhere to go"

Newstalk
Newstalk

11.56 3 Jul 2015


Share this article


According to the latest figures, there are more than 4,000 people across the country living in emergency accommodation.

1,000 of these are children.

In just a few weeks time, the Connolly family from Mountmellick in Co Laois fear that they will be adding to those numbers.

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What makes their situation all the more traumatic is that Ben and Jake Connolly, who are aged six and two, are both terminally ill and require round the clock medical care.

Newstalk Breakfast reporter Kieran Cuddihy met with the family and spoke about their story on the show this morning:

"What's unique about Ben and Jake is they were both born with a syndrome called Allan–Herndon–Dudley syndrome," Kieran explained. "They're the only people in Ireland with it. Only 200 people around the world have it. Essentially it's a thyroid problem.

"It results in severe cognitive problems, and muscle mass problems... Ben is profoundly affected. He can't sit up, he can't support his own head... he has an age of about a one-year-old even though he is six."

Ben and Jake's parents Nicolette and Terence told Kieran about their incredibly busy care schedules - even when things are going smoothly, it's nearly a 24 hours a day, 7 days a week routine. The medication and care routine "leaves about 2am to 4.30am of relative calm - providing neither of them wake up - every day for sleep, that's about it." 

Ben suffers terribly from seizures, and his parents explained what it's like when that happen. "When he goes into these he totally locks off, he's like a plank of wood," Nicolette said, while Terence explained "the doctor said a five minute one of them is like a 20 mile marathon."

Both parents had to quit their jobs when their children were born, and it is impossible for them to work even with nursing assistance. As a result they have fallen into arrears on their loan. They reached an agreement with their lender last year to surrender their house later this year, but they have not been able to find a suitable place to leave.

However they are trying to raise money to build a specially adapted house for Ben and Jake. They have been donated land, and received full planning permission - and have raised about €160,000 out of €450,000 for the build.

Terence explained, "we said we'd try to set up a trust and build a house. The house could be built in the Ben and Jake Connolly Trust, and we kept it their name, and use the house until Ben and Jake pass away and then hand the house back to a charity... [for] a family like ourselves, or a respite home".

You can read more about the Trust here.


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