Heartbroken parents of terminally ill boy want to build home for other disabled children
Published 18/04/2016 | 13:26
The parents of a terminally ill boy, who lost a son from the same illness mere months ago, have vowed to help other children with similar debilitating illnesses.
Terence and Nicollette Connolly lost their two-year-old son Ben to the rare Allan Herndon Dudley Syndrome in January of this year.
Their eldest Jake, currently the only child in Ireland diagnosed with the severe condition, requires 24-hour care and is life expectancy is unknown.
Two years ago, the heartbroken parents set up the Ben & Jake Connolly Trust to raise funds for an adapted house to cater for the needs of similarly disabled youngsters.
Their aim is to let families caring for a sick child to have use of the home until they no longer need it. The home will then be passed on to an equally deserving family.
With a target of €400,000, the fund has currently raised just €200,000 through donations so had a long way to go until there is enough to build the special home.
After the death of their son Ben, the couple hope to build the home before Jake passes away - so that it can then be used to meet the needs of other disabled youngsters.
"This house that we are hoping to build here will be designed especially for disabled children and as a trust," Terence told the Irish Daily Mail.
"As soon as Jake passes, which hopefully will not be for a long time, but whenever this does happen the house will go back to another family that need it or another charity that needs it."
Allan Herndon Dudley Syndrome affects less than 200 boys worldwide, casuing brain damage, severe epilepsy, no muscle tone and a short life expectancy in those affected.
Terence and Nicolette were forced to give up work to care for the boys and have previously feared that they may lose their small home in Mountmellick, Co Laois.