LauraLynn's home service praised for helping Kerry family through 'extremely stressful time'

Nancy, Lily, Hannah, and Brendan Falvey with care dog Nixon at their family home in West Kerry. The Falveys have praised the LauraLynn Children's Hospice for supporting Hannah. Picture: Domnick Walsh © Eye Focus LTD

"Absolutely amazing" is how one Kerry mother has described the home support service which is offered by LauraLynn Children’s Hospice.

The country's only children’s hospice is currently offered by the charity at its Dublin base. It’s first regional service opened from a base at the Mallow Primary Healthcare Centre in 2023.

The Falveys in Annascaul were one of the first families to sign up when the community regional service was launched, and they are now one of the more than 100 families in Munster who have since benefitted.

Nancy Falvey explains her daughter Hannah, now 12, has a neurodevelopmental disorder called Rett syndrome, along with other challenges such as epilepsy and scoliosis.

“Hannah is amazing, she laughs a lot,” she said.

“It is mainly girls who have this syndrome. She doesn’t talk and she is non-mobile, so she’s in a wheelchair. But she has a really strong eye gaze, so she talks with her eyes.” 

The little girl’s challenges began at around three months old with a lot of coughing and vomiting. The family were in and out of hospitals for the next few months.

“It was an extremely stressful time,” Nancy said.

“I knew there was something wrong, there was a lot of things she couldn’t do. She was diagnosed when she was 18 months, she got the diagnosis from a neurologist in Cork.”

Nancy described this as a relief.

“I know a lot of parents don’t find it a relief to get a diagnosis of a syndrome, but I knew there was something drastically wrong and it was good to have a name for it,” she said.

Lily Falvey is very close to her sister Hannah, who suffers from has Rett syndrome, epilepsy, and other challenges. Picture: Domnick Walsh © Eye Focus LTD

Hannah goes to school now, but she needs a lot of assistance. Nancy is a full-time carer while her husband Brendan is at work. Their older daughter Lily is very close to Hannah.

They first heard about LauraLynn when Hannah had an operation for scoliosis in early 2023. It meant she was in hospital from February to September.

While the operation was “a huge success”, she said this time was very tough on the little girl. It included six weeks at the intensive care unit in CHI at Crumlin.

When a liaison nurse in Kerry suggested a then new community service, the family were immediately interested.

“That is when the branch at Mallow kicked in, they gave us a good bit of help,” Nancy said.

The nurses came out once or twice a week. The branch was very new, but I felt the people were very experienced. They knew about peg-feeding, and they had a high standard of paediatric knowledge

Peg-feeding is being fed liquid food through a tube in the stomach.

“It takes a long time,” Nancy said.

“[Hannah gets] nearly 20ml every 10 minutes because if we go any quicker she would get reflux.” 

Usually when LauraLynn staff are there, the parents leave and maybe catch up with shopping or take other siblings out.

“The first year I wasn’t physically able to leave because I was too tired,” Nancy said. “I just went to bed when I had help like that. That was massive for me, it was a really big help.” 

Now things are more relaxed, and Hannah especially likes the music therapy.

“When people interact with Hannah, she does respond really well, it’s very rewarding,” she said.

“She’s very mischievous, there’s lots of laughing going on.” 

Medical concerns and questions

The other family members have also benefitted from LauraLynn.

“They always involve Lily, and I found that very good,” Nancy said.

“And they are all very good listeners. Myself and my husband have worries and they listen. We might have medical concerns or questions, and they are always there. Sometimes they can’t give advice, and that’s fine, but it’s just someone to listen to you.” 

Marie Lynch is the assistant director of nursing for community services at LauraLynn. She lives in Cork and travels to the other services.

“Since we opened, we’ve supported 111 families [from Mallow],” she said. 

We’ve done that through about 2,400 visits into families’ homes. What we’re really supporting is children who have a palliative care need

It offers nursing and family support teams, with the latter including play and music therapists.

“We often would support families around new symptoms when they come up,” she said, saying in some cases “we come in and out of the child’s life” while other families need more long-term help.

The staff also help when a child is nearing the end of their life, including with very young babies.

“Staying at home is really important to some families, that focus of family time and sibling time that isn’t in a clinical environment,” she said.

“We support families locally who have made the decision to have their end of life journey at home.” 

The charity works closely with the HSE and other services. Bereaved siblings can also work with the play or music therapist.

“Our bereavement pillar starts from the time of diagnosis, and it carries right through to the child’s death and beyond. We support families for up to three years after they’ve been bereaved,” she said.

She added: “Sometimes we will have kids for short days in our service, and then it goes all the way up to years.” 

Assistant director of nursing for community services Maria Lynch says that the staff also help when a child is nearing the end of their life, including with very young babies.

The charity uses therapy spaces around Munster, including “really lovely partnerships” such as a siblings day at Musgrave Park/Virgin Media Park.

LauraLynn CEO Kerry McLaverty said the idea grew from wanting to help families who could not easily access the Dublin hospice.

She said for families: “Having a very vulnerable or sick child makes travelling long distances a barrier.” 

It is not known how many children face life-limiting conditions in Ireland. LauraLynn is taking part in a study on this with the Health Research Board and Irish Hospice Foundation.

“We will very shortly have tangible Irish population-based evidence, so we’re looking forward to that,” she said.

The Mallow teams work across Cork, Kerry, Limerick, Waterford and South Tipperary. They can also support families who wish to use the Dublin hospice and make that experience easier too.

Kerry spoke of how grateful LauraLynn is to donors.

We are hugely reliant on donations, we receive just shy of 30% in terms of HSE funding, so the vast majority is fund-raised income

LauraLynn now also operates out of Ballinasloe, with 71 families supported there so far this year across the North-West.

She described how it has seen many local donors come on board in both regions since the community services began.

“We’re seeing people like to support locally,” she said, noting their funds feed into the national service — including the hospice.