The dream of building a wheelchair accessible home for severely disabled boys Ben and Jake Connolly from Mountmellick is a step closer.
Last December planning permission was lodged on behalf of the boys’ trust, for a ‘special needs’ dormer bungalow at Graigue, Mountmellick. A decision is due by February 26.
The house will include a bedroom and wetroom for each brother, a sensory room and a nurses dayroom.
It is estimated to cost €450,000 to complete. So far €120,000 has been raised by parents’ Nicolette and Terence who launched an urgent public appeal last March.
“I hope it goes smoothly now, it will be a long time yet but it’s great to make a start,” said Nicolette.
They have been advised to begin building as soon as permission is through.
“Lots of people are volunteering but we haven’t thought about that stage yet,” she said.
The family live in a cramped two storey house on Connolly Street, with no space to extend. They sleep upstairs in one bedroom in order to constantly care for the boys and administer medications.
Downstairs the kitchen and sitting room double as day bedrooms, and while nurses have now been made available for 50 hours a week, it means there is no private family area.
Ben (5) and Jake (1) have Allan Herndon Dudley Syndrome, causing progressive brain damage, loss of muscle control and epilepsy.
They are the only two Irish cases, with only 200 worldwide. Most will not live beyond their teens.
When the boys pass on, the house will be given to Irish childrens hospice charity Laura Lynn as their lasting legacy.
Both boys are having a tough time right now, with Ben recovering from infections and Jake having difficulty keeping feeds down.
“Jake’s main issue is his tummy, but we hope new equipment to take air from it will help,” Nicolette said.
Support continued over Christmas, with €10,000 raised by local Bank of Ireland branches, €3,238 by Mountmellick CS students and €2,036 from a tractor run in Ballacolla to name but a few.
“It’s unreal, lots of people made a donation instead of sending Christmas cards, that was lovely, everyone is doing their own little bit,” said Nicolette.
See www.ben&jake connolly trust.com for more.