The parents of severely disabled brothers Ben and Jake Connolly from Mountmellick have gone nationwide for help to build them a home.
Nicolette and Terence care full time for Ben aged 5 and Jake aged one, in a cramped two storey townhouse.
They are in mortgage arrears and have no room to extend. With no help from the government and limited supports from the HSE, they put out a public plea for help to build the boys a safe home.
Last week with a trust fund finally set up, they went nationwide on TV and radio, getting an immediate flood of support and donations.
“It’s been a mad couple of days, with emails and phonecalls, and donations from as far as America, but it’s not difficult to talk. We are glad it is at this stage, we have to keep it going,” said Nicolette.
The boys are the only two in Ireland to have a rare life shortening illness, Allan Herndon Dudley Syndrome. it causes progressive severe intellectual and physical disabilities.
They get huge doses of medication and are tube fed, needing 24 hour care.
Their parents need to raise half a million euros to build them a safe home, with hoists, washrooms and a playroom.
When the boys pass away, it will be given to the Laura Lynn children’s hospice.
“People shouldn’t have to go down this road. We got out and made it happen but not every family is strong enough to do that. If you were to put your child in full time care, it’s going to cost the government more money. Parents who are willing to keep their child at home, should have help to do that. We got fed up waiting around and started to fight for ourselves, but now we want to keep going so there is something there for the boys to remembered by, a legacy,” said Terence.
Their campaign began locally last March and got a heartfelt response from communities in Mountmellick, Portarlington, Newbridge and surrounding villages.
Everything from wedding favours and cake sales, to marathon runners and greyhound racing, brought in more than €70,000, and paid for a wheelchair accessible vehicle.
“We are overwhelmed with the support we got from our local towns, It has driven us on to go nationwide. We appreciate them all for that,” said Nicolette.
Plans for the house are being finalised.
“Percolation has passed, but we can’t say where the site is until plans are approved. it is in the Mountmellick area. it is a bungalow with a big hall, rooms with washrooms for each of the boys and a playroom. Leslie Colton from Stradbally is the architect. It is nice to see the plans, but we still have a big hurdle to go, a lot of money to gather,” said Terence.
He is hopeful they will have their house by the end of 2015.
“We have some offers to help build it, every bit of help will be welcome,” he said.
To donate go to www.Benandjakeconnollytrust.com