Ben Connolly from Mountmellick who is battling illness in Portlaoise hospital
The Ben and Jake Connolly Trust in Mountmellick, Laois has requested continued prayers for Ben, who is in Portlaoise hospital for the past few days battling illness.
Ben, 9, has a rare life limiting illness that causes brain seizures, loss of muscle control and brain damage. Sadly his little brother Jake died of the same condition, Allan Herndon Dudley Syndrome.
Ben frequently becomes ill, and last week in late November he was again taken into Portlaoise hospital.
The Trust is asking the public for their prayers and positive thoughts for Ben.
They gave an update on his condition on Monday December 3.
"Please continue to keep Ben in your thoughts. He is still very unwell in hospital, on a lot of oxygen and sedation. He has an underlying virus causing increased dystonic attacks. Portlaoise hospital in conjunction with Temple Street have increased his dystonia medication, this will hopefully settle some of attacks down so he can have less sedation and be weaned off the oxygen.
Thank you all so much for your shares and well wishes , everything little thing people do means so much and makes a difference to brave Ben".
On Tuesday, a video was posted showing a sedated Ben and asking for continued prayers.
The trust has also begun a campaign to ask US chat show host Ellen DeGeneres to help Ben.
They ask that the following message be copied and pasted into the application form:
"Ben is a 9 year old boy living in Ireland, he was born with a rare life limiting disease, he is physically and mentally disabled, unable to sit unaided or support his own head, he cannot talk, will never walk, he is tube fed and has seizures. We lost his 2 1/2 year old brother Jake to the same rare syndrome, Ben needs a house to suit his medical needs before he runs out of time. There is a house being built in his name 3/4s way finished but we need help to get it over the finish line. Ben currently is in an old house unsuitable to his needs there is no room for a hoist so he is bed bound and stuck with bed baths. Please help Ben be happy before he re-meets his brother Jake in heaven".
The Ben and Jake Connolly Trust is a volunteer group raising money to build a purpose built house for Ben to live out his last years in comfort. The family home in the town has no room for a hoist or a wet room, so Ben is currently bed bound and gets bed baths. It is hoped to have the new house fully ready for Ben next Spring. After Ben's lifetime, it will be offered as a home to others with similar health needs.
The next fundraiser for the Ben & Jake Connolly Trust is a Santa Dash on Sunday morning December 16 in Mountmellick. Participants are asked to dress in their Santa costumes and take part in the fun run/walk, setting off from the MDA centre at 10.30am, registration opens at 9.45 am. €10 per adult or €15 per family. The proceeds will be shared jointly with the Bone Marrow for Leukaemia Trust.