Cork mum says nurses caring for Grace, 4, are 'like our extended family'

A Cork family has praised the nurses at LauraLynn for their invaluable .

Elizabeth Leahy and her husband, Kevin, live in Glanmire with their children, Gwen, 6 and Grace, 4.

Grace was born with the genetic condition NACC1, resulting in multiple life-limiting conditions.

“When Grace is in respite at LauraLynn, Kevin and I can go for a walk and for dinner,” says Elizabeth. “We can enjoy quality time together.

“The LauraLynn nurses take over, offering a babysitting service for up to four hours. They take over. We know that Grace is in great hands. The nurses are medically trained. It is great.”

The LauraLynn nurses bring care and colour to families facing the toughest of journeys.

Grace’s condition is very rare.

“There are only 50 children in the world with the same condition as Grace,” says Elizabeth.

“The late Fionn Barry, from Charleville, who ed away age 7, was one of them. Sadly, I never got to meet Fionn.”

Like Fionn, Elizabeth and Kevin’s daughter brought huge joy into the lives of their families and to the people around them.

“I noticed at six months old that Grace wasn’t sitting up or rolling around on the floor,” says Elizabeth.

“Nobody else thought anything was wrong and put it down to ‘mum is anxious’.”

Mum is instinctive.

“I felt I needed to say to the GP and to the public health nurse, ‘look at her muscle tone,’ says Elizabeth.

“Mary Naughton, in charge of the public health nurses in Cork, reviewed Grace. Within a week we were out to the Lavanagh Centre to see Dr Enright.”

He is a consultant paediatrician.

“Grace was referred to paediatric neurologist, Dr Olivia O’Mahony in the Mercy Hospital,” says Elizabeth.

“She had genetic tests done as well as a spinal tap and more tests. Grace was irritable, she suffered long, colicky periods, she had to be peg-fed as there was no message getting to her muscles. Grace did not react to anything. She cried a lot, and she was hospitalised a lot. It was a neurological problem.”

When Grace was diagnosed, the family knew that they would need help, and they welcomed the help with open arms.

“We welcomed the help from the LauraLynn nurses and from the Jack and Jill nurses,” says Elizabeth.

“The care they all provided to us was invaluable

“They knew before we did what we needed.”

Grace likes the nice things in life.

“Ainé provides play therapy and Grace loves the music therapy,” says Elizabeth.

“The nurses from the hub in Mallow will come and sit with Grace, and I can go out for a coffee. They are marvellous.”

Big sister Gwen is marvellous.

“Gwen adores Grace,” says Elizabeth.

Gwen is mature.

“She is six going on 16!

“Gwen plays with Grace, and she introduced Grace to her pals.”

The girls have loving people around them every day.

“Kevin’s parents are just up the road,” says Elizabeth.

“They are amazing, and they recognise Grace’s complicated needs. They are a great help. Grace poses challenges even for medically trained nurses.”

The LauraLynn nurses are well up for a challenge, and they are well up for providing their expert care to very ill children.

“Sometimes the house can be like a train station!” says Elizabeth.

“The nurses are in and out all the time. They are like our extended family.”

Grace’s future is a palliative care future.

“When Grace experiences episodes, it could be her last one,” says Elizabeth.

“I don’t let my brain go there. I can’t go there. It is difficult to think things will get harder in the future. Nobody knows. It could all end suddenly, which is terrible to say.”

Grace’s needs may become greater.

“As Grace gets heavier, she will need a suitable vehicle to accommodate a wheelchair,” says Elizabeth.

“We may have to put on an extension to the house. For now, we live day-to-day.”

Every day, though, Grace lights up the people in her life.

“Grace loves lights and music,” says Elizabeth. “She responds to lights and music. She loves being tickled.”

“If I could tell you the amount of times that the nurses have threatened to steal her!” says Elizabeth laughing.

That’s not happening.

“I tell the nurses, you will bring her back when she has an episode!”

Grace is a people person.

“She loves the hustle and bustle going on around her,” says Elizabeth.

“She loves watching the nurses come and go. Grace has a physiotherapist and an OT. The amount of is incredible.”

Grace has brought incredible gifts to her family.

“She has brought amazing gifts and amazing people into our lives,” says Elizabeth.

from LauraLynn

LauraLynn is Ireland’s only children’s hospice, providing palliative care and for children with life-limiting conditions and their families.

They offer services like respite care, crisis care, transitional care, and end-of-life care, along with family .

Since opening in 2011, LauraLynn has cared for more than 680 children and their families, helping them to them through the child’s illness and beyond. Grace is one of these children.

LauraLynn currently provides care for 500 families, including children with life-limiting conditions.

A survey carried out by LauraLynn in April, 2025, ahead of Children’s Hospice Week, found that 84% of respondents feel isolated in their caregiving role, and that 90% worry about the emotional impact on siblings.

Also, 86% of caregivers wish they had more time to parent rather than a carer, while 65% of caregivers find it challenging to focus on parenting.

There is a lot of time and effort needed to care for a child with a life-limiting illness, and 77% of respondents care for more than 12 hours a day.

Some 95% feel overwhelmed by caregiving responsibilities, and 76% care for their child through the night.

The impact on family dynamics is huge.

83% worry about not spending enough time with other children.

75% find it challenging to balance the needs of siblings.

55% find the psychological impact on siblings challenging.

Finances can be difficult to manage. 86% say caregiving impacts their finances, 83% had to give up work, and 91% had to reduce work hours.

60% feel financial s are inadequate.

63% find the financial implications challenging.

“We say to families caring for a child with palliative care needs, we understand the challenges in your everyday life, and we will continue to you,” said Kerry McLavery, CEO of LauraLynn.

See LauraLynn.ie