Ben Connolly from Mountmellick enjoying a holiday in Disneyland Paris, given by the Make-a-Wish foundation.
Messages of support have flooded in to the family of a much loved Laois boy who is sadly nearing the end of his short life.
Ben Connolly, 10, from Mountmellick suffers from Allan Herndon Dudley Syndrome, a rare condition that also took his little brother Jake when aged two in January 2016.
When Jake was also diagnosed as a baby, the family turned to the public with a dream of building them a wheelchair friendly home with suitable facilities to help them live out their days as comfortably as possible.
A wave of public support from Laois and all over Ireland raised over €250,000 but while that home is tantalisingly almost ready now, it is a fading hope that Ben will be able to move in and enjoy it.
Last Saturday September 14, the Ben and Jake Connolly Trust posted the following message from Ben's mother Nicolette Farrell, about his deteriorating condition.
"It’s with a sad heart I share the below letter".
She describes Ben's inspiring life.
"Ben has been an inspiration and such a strong fighter this past ten years. He has inspired not only his family, but local community and many even further afield," the Trust said.
"Last November was the start of his body becoming tired and extra symptoms coming on board that his neurology team no longer became able to manage alone. A few months ago he became put under the care of a Palliative Consultant and nurse. We had an appointment a little over a month ago which re-confirmed that Ben has now entered ‘the final stage of life’."
"The past month was needed to let various family absorb this news and absorb all this myself - it has been a rollercoaster of emotions, at times quite understandably I’ve felt quite flat, other times overwhelmed, but always remaining proud."
"Palliative care cannot give an exact timeline, only that he is in the final stage but it means he is now on borrowed time. Ben himself is sleeping a lot longer, his window of awake time has decreased to overall approximately 6/7 hours a day, he is on very strong anti-nausea medication, he has good days and horrible days," Nicolette Farrell said.
"I don’t know what more to say only this is where he is at and thank you to all for supporting over the years x"
The sad message has received over 300 messages from well wishers, all keeping Ben in their thoughts and prayers.
Fundraising continues for the Trust to complete the Ben & Jake Connolly House. The volunteer run Trust hope that in time it will be home to other children with life limiting conditions. see the website here.
Below Ben pictured with his little brother Jake.