'From the very first minute, we knew it was a very special place'

When Gina O’Flaherty speaks about the LauraLynn Children’s Hospice, she finds it hard to put into words the positive impact that it had, and continues to have, on the life of her family since they lost their precious youngest daughter, Muireann, at just five and a half years old.

The O’Flaherty family, who live in Bealnamulla, are delighted to have been chosen by LauraLynn to front their Christmas Appeal, which is the biggest fundraising event of the year

LuaraLynn receives €1.5m in the form of core State funding which equates to 30% of the Hospice’s running cost, with the remainder coming from public support.

Christmas is a particularly poignant time of the year for Declan and Gina O’Flaherty and their family as little Muireann would have celebrated her 11th birthday on December 30.

Although she was born with a number of challenges and was eventually diagnosed with an extremely rare neurological disorder - Ponto Cerebellar Hypoplasis – which left her unable to walk or talk, her mother, Gina, says she made “a huge impression” on everyone who met her during her short life.

Gina recalls the family being “bombarded” with medical appointments after Muireann was born, at a time when they already had three other children under the age of six, Oisin, Liam and Sadhbh.

“It was a very busy time in our lives, and it took us a year and a half before we got a diagnosis for Muireann so we were up and down to Temple Street Hospital and over to Portiuncula, all the time,” says Gina.

“And when we got the diagnosis we were wondering where in the world we could we turn to for help.”

She says “absolutely everything in our family centred around Muireann’s illness” and she acknowledges that it was difficult for her and her husband to give equal time to all their children. “She absolutely adored her big brothers and sister and they adored her, and they never felt left out by the amount of attention that had to be given to their baby sister, they were very protective of her.”

LauraLynn came into the lives of the O’Flaherty family when Muireann was two years old, and Gina admits that it became like “a second family” over the next three and a half years, and still provided support to the family five and a half years after the passing of little Muireann.

“Temple Street referred us to LauraLynn and from the very minute we first walked in the door we just knew it was a very special place,” says Muireann’s Mum.

“They didn’t just see Muireann, they saw the whole family and the impact that her illness was having on each of us as individuals as well as the impact on us as a family unit.”

She recalls the first time herself and her husband (who is a native of Lanesboro) left LauraLynn and he said ‘these people really want to help us’ and they couldn’t believe they had found such a wonderful place.

The only criteria for a child to enter LauraLynn is that they must have a life-limiting condition, and they currently provide care and supports to more than 340 Irish families who are facing the premature death of a child.

LauraLynn Children’s Hospice became such an integral part of the O’Flaherty’s life that their older children went to see Santa there and it got to the stage that they loved the place so much that they actually “wanted to stay there” according to Gina.

LauraLynn has an end-of-life room called the “Butterfly Room” but the O’Flaherty’s did not have to avail of this service as Muireann passed away at the family home in Burnbrook, Bealnamulla , surrounded by her loving family.

“The support staff from LauraLynn came to our family home during the final days of Muireann’s life, and to our other children it wasn’t like they were strangers, they were friends, and they provided wonderful support to us during those very difficult days.”

The LauraLynn support staff advised the O’Flahertys to have Muireann’s siblings to write letters to her, and Gina recalls Sadhbh, who had just turned seven, writing a letter to her baby sister and reading it aloud to her shortly before she passed away.

“She came out of the room in tears, but it was a very important moment in the grieving process, and we probably never would have thought of it because you don’t think of such things when you a facing the loss of a child,” she says.

Another piece of advice from the LauraLynn support staff was that Muireann’s siblings should give her “little gifts” that could be buried with her.

Gina O’Flaherty recalls how Muireann loved “music, water and lights” and this was something that the staff in Lauralynn “immediately recognised and fostered at every turn.”

Despite her all too short life, little Muireann O’Flaherty’s legacy lives on, especially in her mother, who went on to qualify as a nurse after the death of her youngest daughter, and has been working as a Covid Vaccinator in Athlone and Roscommon since last February.

“Two weeks after I was offered a place as a mature student on the Nursing Course in AIT, we were told that Muireann was going to die, so I pledged that I would complete the course and qualify, and I would have to say Muireann was the patient in my head every step of the way throughout the course and during my exams,” admits Gina.

The O’Flahertys attended bereavement sessions with LauraLynn after Muireann passed away, and they still receive support from the service to this day.

“Every family who has a child with a life-limiting condition should allow LauraLynn into their lives,” urges Gina O’Flaherty, who adds that herself and Declan and the lives of their family were “enriched beyond measure” as a result of their engagement with the service.

“It is very hard to put into words what LauraLynn has done for our family, and continues to do, and we would urge everyone to make a donation today so that this wonderful service can continue to support families like us,” she says.