Supporters of a trust set up for two children born with an extremely rare disorder has appealed for help to finish a care facility being built in Co Laois.
The Ben and Jake Connolly Trust was established to help raise funds to build a home for the children, who suffer from Allan-Herndon-Dudley syndrome, a terminal condition that affects brain development, causing severe cognitive deficiency and low muscle tone.
The Mountmellick brothers were the only two people in Ireland with the syndrome, while only 200 people worldwide have it.
They were born missing the cell that allows the thyroid hormone to pass through to their brain. This causes issues in relation to the wiring of the brain and slows down or causes mixed messages to be sent from the brain.
Jake died suddenly last year aged 2½. Ben (8) requires 24-hour care by nurses as well as his parents, Nicolette and Terence Connolly.
To date more than €240,000 has been raised through community fundraising, which has allowed for the building of the care facility but interior works are not yet complete.
“We would love to get the project finished and given the sudden nature of Jake’s passing last year, you never know what’s going to happen. Since Jake’s passing it’s been a tough year and a half,” Ms Connolly said.
“I would love to see the house finished and even though Jake was unwell in the hospital before he died, we had no warning that he was going to go. There was no inclination that anything was majorly wrong so that fear is always there in the back of our mind.”
Funds running low
Mr Connolly has been working away at the care facility, trying to keep the work moving – and get Ben moved in by Christmas – despite funds running low.
“We’re happy with how the project has gone so far – there has been a great support from the local community over the past few years,” he said.
“Ben’s room has been especially equipped with hoists which will be a great assistance to us and the nurses when it comes to simple things like giving Ben a bath. It’s coming [to a point when] Ben is going to be too big for any of us to be able to lift him so we really need to get this project finished.”
The house, which would serve as a care facility for other sick children in the future, is located just outside Mountmellick.
PJ Dempsey, a trustee of the Ben and Jake Connolly Trust, has been one of the foremost supporters of the project.
“It’s not that we are stopping but we have slowed down as we are running out of funds,” he said. “We are on the final stretch of the journey and it would be amazing to get the house finished so Ben can be here for Christmas.”
Anyone who wishes to help the Ben and Jake Connolly Trust reach their goal can visit to donate at www.benandjakeconnollytrust.com