BREAKING: Laois special needs Ben & Jake House gifted to disability charity

The state of the art Laois care home built for two special little boys who have since passed away, has been gifted to a charity.

The Ben and Jake Trust has formally handed over their community funded house near Mountmellick to the Muiríosa Foundation on September 30.

The Ben & Jake House will now serve others with disabilities, as a lasting legacy of their tragically short lives.

The handover marks the last charitable act following what was an incredible six years of community effort to build the house for Ben and Jake Connolly and their family to enjoy the best quality of life possible. 

From the site to materials, to labour, trades and fitting it out with hoists and furniture, it was funded by some €365,000 raised from countless charity events in Mountmellick, Portarlington and beyond. 

Both brothers were born with a rare incurable condition, Allan Herndon Dudley Syndrome, which caused increasing brain damage, lack of muscle control, severe epilepsy, and short life expectancy.

The late Jake and Ben Connolly.

Their parents Nicolette and Terence first appealed for public help in 2014 through the Leinster Express, after Jake was diagnosed too as a baby and they realised they could not cope financially or physically, giving 24 hour care in their cramped Mountmellick house filled with medical equipment.

Their appeal led to a tsunami of fundraisers, including an auction, little black dress night and a golf classic. A volunteer committee and a trust formed in Mountmellick to oversee the donations and build a suitable house for the boys.

Tragically Jake died aged 2 in 2016 before the house could be completed. 

Ben moved into the beautiful finished home in December 2019, and spent his final seven months there in comfort with his family and nurses, before peacefully passing away in July 2020, aged 11.

After a grace period of mourning out of respect for their family, the volunteer trustees PJ Dempsey and Joe McEvoy began to search for the right charity to receive the property.

On September 30 2024, the key was handed over by Nicolette, Terence and their son Billy, to Siobhan Bryan, CEO of the Muiriosa Foundation. It is to remain the Ben & Jake House, offering a tranquil, comfortable home for people with disabilities and their carers. 

The Moore Abbey based charity run residential care homes for people of all ages with disabilities across the Midlands. 

PJ told the Leinster Express / Laois Live why they were chosen for the special gift.

“In consultation with the families, as trustees our job was to find the right charity, it took nearly two years. Mainly every group we talked to would have taken and sold it.

“Muiriosa are very Midlands based, a lot of our funding came from places where they have houses. They employ 1500 people, with almost 30 residential homes and respite services, day services and preschools in Laois alone, including in Mountmellick.

“They were very happy and keen to keep the name, the Ben and Jake House and they intend putting up a plaque to honour the name. 

Ben and Jake's brother Billy closing the door of the house for his final time. Photos: Cathy Bishop

“We met Siobhan Bryan their CEO and she was very easy to speak with, and very excited when we met about the house. She said they usually have to convert houses they take on and they would be nothing to the high standard we have, with hoists and tracks in every room. 

“Our wet room is designed to take full push in trolleys. All the rooms were designed for children or adults. The two main bedrooms have double doors to the outside if there is a need to evacuate. It is a state of the art house funded by many donations. There is a big sensory room, other bedrooms and the whole upstairs is for a live-in nurse.

“With more finances more could be done, at the time we were just anxious to get Ben in. There is potential, it’s a fine site,” PJ said.

He said that the house had boosted the moods of Ben and all concerned for his final months. 

“That was one of the biggest things we saw in a short space of time, from his family, the carers and Ben himself , you could see the difference,” he said.

The handover was an emotional day he said.

“We had done all the paperwork prior to it. We had our solicitors there, the CEO Siobhán Bryan, some of Ben and Jake’s nurses, some of our community. We had a chat and tea and coffee, and then the official handing over of the key,” he said.

“Myself and Joe would like to give particular thanks to anyone who did fundraisers, sold tickets, held coffee mornings, and to all who worked on the house. Many of them gave their time completely free. The biggest thanks of all is to the fundraising committee - Janet Stewart, Deirdre Quinn, Cathy Bishop, Nina Horan, Rose McEvoy and Niamh McEvoy.

“Both communities of the Farrell and Connolly families gave huge help in Mountmellick and Portarlington,” he said.

PJ and Joe will now disband the trust.

“It was an honour for us to be trustees. We offer our thanks to the family and all who helped. We are now happy it’s come to a conclusion and we found an organisation that meets the approval of the families. To build it at all was a great achievement,” he said.

The exterior of the Ben & Jake House when it was under construction and inset: the two boys.

Siobhán Bryan, CEO of the Muiríosa Foundation, says the Ben & Jake House will leave a lasting impact on the lives of people with disabilities.

She gave a statement to the Leinster Express / Laois Live following the handover of the special Mountmellick house.

“In April 2024, I was approached by a local Laois representative of the Ben and Jake Connolly Trust who had built a bespoke medically adapted house for twin boys, Ben and Jake (RIP). Both boys were born with a rare life-limiting medical condition called Allan Herndon Dudley Syndrome. Regrettably, both boys passed away at a young age.

“This engagement was to explore the feasibility of Muiríosa Foundation taking on the delivery of a support service from the house.

“Following a number of meetings with Ben and Jake’s parents and trustees of the Charity, in a gesture of goodwill and generosity, the house was gifted to Muiríosa Foundation to provide high-quality support services to adults with disabilities. 

“The property is of a high standard, in a prime location a couple of miles outside Mountmellick, with a good size garden, a large number of bedrooms, some with hoist tracking devices on the ceiling. The only stipulation the parents required was that a plaque to honour Ben and Jake’s memory be erected at the house. 

“The parents can take great solace that the phenomenal legacy of Ben & Jake will not only live on forever but will leave a lasting impact on the lives of people with disabilities for many years to come.

“The transfer of this unique property to Muiríosa Foundation demonstrates a commitment to supporting people with disabilities and is a prime example of how a community can work together in a collaborative manner towards a common goal, in this instance, to deliver essential support services to those who need it most.

“As the official handover concluded on Monday, September 30th 2024, the next crucial step is to devise a comprehensive plan to ensure that the Ben & Jake house serves its new purpose as effectively as possible. 

“This plan may involve the reconfiguration of a number of people currently living in Muiríosa residential arrangements to better meet their needs. However, the specific details of the services are yet to be finalised, but the foundation has been well and truly laid to repurpose the property to transform and improve the lives of people with disabilities.

“It would be remiss of me to let this opportunity go by without extending my sincere thanks and gratitude on behalf of Muiríosa Foundation to Ben and Jake’s parents Terence and Nicolette, and the Trustees of the Ben & Jake Connolly Trust, for their commendable act of kindness in entrusting the Ben & Jake bespoke property to Muiríosa Foundation.

Muiríosa Foundation is a voluntary health organisation. It is funded by the Department of Children, Equality, Disability, Integration and Youth, through the HSE.

Muiríosa Foundation operates in over 200 locations throughout the midlands. In Muntmellick alone it has four residential houses and two day service locations. They also operate in Monasterevin, Rathangan, Athy, Portarlington, Portlaoise, Abbeyleix, Stradbally, Tullamore, Birr, Mullingar, Athboy, and Longford. In recent years they expanded to provide community-based services in Tipperary and Kilkenny.

Muiríosa Foundation provide services to over 1,300 people with an intellectual disability and their families across the Midlands region and employ over 1,500 people.