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Parents of boy (4) with life-limiting condition say charity help them enjoy Christmas

Ben deals with epilepsy, autism, sleep, sensory and autonomic disorders and is unable feed himself, speak or walk, needing 24/7 care.

Shane and Clare McHugh from Maynooth with their children Ellie (6), Ben (4) and Tom (1). Ben receives in-home nursing care from Jack and Jill Children’s Foundation. Photograph: Leon Farrell / Photocall Ireland

Clare McHugh from Maynooth with daughter Ellie (6) and son Tom (1) preparing for Christmas at home with brother Ben (4) who receives in-home nursing care from Jack and Jill Children’s Foundation.© Photocall Ireland

Shane McHugh from Maynooth with his son Ben (4) who receives in-home nursing care from Jack and Jill Children’s Foundation. The charity hopes to raise €1 million through its Home for Christmas Appeal to meet the demands for its services. Photograph: Leon Farrell / Photocall Ireland© Photocall Ireland

Maeve McTaggartSunday World

Children’s charity Jack and Jill are hoping to raise €1 million to give sick kids and their families a meaningful Christmas together.

The foundation, who provides at-home nursing, respite or end-of-life care for children, hopes to give them “the gift of time” this festive season.

Shane and Clare McHugh, who live in Maynooth in Kildare with their three children, say Christmas is even more special when you have a young child with a life-limiting condition.

Their son Ben (4) has a condition that remains undiagnosed, despite extensive tests.

He deals with epilepsy, autism, sleep, sensory and autonomic disorders and is unable feed himself, speak or walk, needing 24/7 care.

Clare McHugh from Maynooth with daughter Ellie (6) and son Tom (1) preparing for Christmas at home with brother Ben (4) who receives in-home nursing care from Jack and Jill Children’s Foundation.© Photocall Ireland

"Jack and Jill provide us with a blanket of care and security around Ben,” Shan explained.

"Christmas can be even more poignant for families with children with life-limiting conditions and we are forever mindful of not taking any milestone for granted.”

"Knowing that he is in the best hands, enables us as parents to prioritise other things, whether that be quality time with our other children or to get a night's sleep to function through the week.

"It can be a very difficult transition to open your home up to others, but when you have a child that has complex medical needs and requires 24/7 care; it is the Jack and Jill service that enables you to have a life as a family, creating memories for all your children that they will hopefully cherish and carry into adulthood.

"This is especially true at milestones throughout the year and none more so than at Christmas - the importance of being together at home as a family, the arrival of Santa, the tree, the presents, the smiles, the laughter, and the creation of new memories together."

The Jack and Jill Foundation supports children with severe to profound neurodevelopmental delay with in-home nursing care and respite up to the age of 6.

It also provides end-of-life care to all children, doing so for over 2,800 families over the last 25 years.

The charity’s Christmas appeal aims to hit the €1 million mark through donations and special gifts.

“With more children under our care than ever before, public support is vital in helping us raise €1 million by Christmas to keep our service going – a service that is a lifeline to many of our families,” says CEO Carmel Doyle.

Shane McHugh from Maynooth with his son Ben (4) who receives in-home nursing care from Jack and Jill Children’s Foundation. The charity hopes to raise €1 million through its Home for Christmas Appeal to meet the demands for its services. Photograph: Leon Farrell / Photocall Ireland© Photocall Ireland

In order to keep the service going, the charity must raise €4 million per year to meet the needs of the 400 families who are supported by Jack and Jill.

"We have a big fundraising mountain to climb to keep us going to Christmas, and beyond, and we need the public to support local Jack and Jill families in their community by signing up as a monthly donor, or by buying something from our Christmas Gift Collection”, Ms Doyle said.

"There’s lots to choose from including stunning candles from Paul and William Costelloe, our ‘Odlums Big Book of Baking’, Incognito Art Prints, signed by our wonderful Incognito artists, Gift of Time cards and exclusively designed Christmas cards from Kildare artist Laura Dempsey aka Pickled Pom Pom.

"By making a donation or purchase people are supporting local families through home nursing care hours that translate into a real gift of time this Christmas”, she added.

The charity was set up by parents Jonathan Irwin and Mary Ann O’Brien in memory of their son Jack.

Their toddler passed away at home at the age of 22 months in December 1996.

Jack and Jill depends heavily on public donations to fund their service that has no means test, no waiting lists and no unnecessary paperwork and red tape.

To buy festive gifts or make once-off or a monthly donation, visit jackandjill.ie.


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