‘When you have a child with a disability you learn that you are stronger than you ever thought possible’

The loving mother of teenage girl who needs round-the-clock care desperately needs to adapt their north Meath family home to give her precious daughter Fionnuala the quality of life and dignity she deserves. In a further blow Tracey Holsgrove’s husband Liam, suffered serious injuries following an horrific road traffic collision whilst cycling in 2017.SALLY HARDINGspoke to the Oldcastle woman who described the last few years as a “nightmare”

The mother of a teenage girl who was born with a rare neurological condition resulting in her needing 24-hour care says her hopes to adapt the family home to accommodate her daughter’s changing needs will give her “the quality of life she deserves.”

Fionnuala Lynch was born to Tracey Holsgrove and Liam Lynch in 2007 with Dandy-Walker Syndrome, a congenital defect affecting the cerebellum, the back part of the brain that controls movement, behaviour and cognitive ability.

As a result, Fionnuala has never been able to walk or stand without support and is severely intellectually disabled.

In April 2017 the teenager became ill with a severe gut infection which necessitated three hospitalisations. Then in early 2018 Fionnuala was diagnosed with scoliosis and in November 2020 underwent a gruelling eight-hour operation to correct the condition which was a success.

In a further blow to the family, Tracey’s husband Liam suffered an acquired brain injury following a horrific road traffic collision whilst cycling.

Describing the last few years as a “nightmare”, Tracey is now focused on adapting their home to give Fionnuala the independence and freedom she needs.

A GoFundMe page to help with the costs of the renovation necessary to adapt the family home. She said:

“Since Fionnuala’s surgery for scoliosis she has been sleeping in what was the living room, with one of us sleeping in the room with her.

“We have no real living space downstairs anymore, which means the three of us are living in the kitchen.

“We have a temporary hoist which is fixed in the living room and cannot be used in the bathroom.

“Consequently, all of Fionnuala’s personal care needs with the exception of showering are carried out in the one room. To give her a shower we have to bring her shower chair into the living room, hoist her into it, wheel her into the bathroom, shower her and then reverse the journey. This is not appropriate for Fionnuala’s dignity and not sustainable long-term.”

Fionnuala who has complex needs requires various interventions on a daily basis as Tracey explains:

“You are trying to do physiotherapy, speech and language therapy, occupational therapy so the day can be very full on at times.

“She has epilepsy which is only partially controlled by medication, and she suffers from daily seizures, you think it shouldn’t be but it’s part of our daily life now.”

Tracey and Liam were informed at 29 weeks pregnant that their little girl had Dandy-Walker Syndrome, a revelation that left the couple devastated.

“I had a routine scan at 28 weeks in Cavan General Hospital throughout which the obstetrician had been talking to us the whole time but when he moved the Doppler over her head, he just stopped talking and I will never forget that moment for as long as I live, I just knew something was wrong. It was one of the most awful moments of my entire life.

“He said your baby has hydrocephalus which is fluid on the brain. I said is our baby going to live, he said I hope so.”

The shocked mum and dad to be were referred to Professor Fergal Malone, a foetal anomaly specialist in the Rotunda Hospital who told the couple that their baby girl had Dandy Walker Syndrome.

“When you find out that you are pregnant and see the blue line on the test, it’s like you are on a particular road, and you know there will be some bumps, morning sickness, a bad back and all of that but you will have a fantastic, wonderful child at the end of it.

“I do have a fantastic, wonderful child but we got diverted on to a very different road that we never even knew existed and there is no way off it.”

Life was already challenging for the family but when Liam was involved in a road traffic accident in 2017 their world was turned upside again according to the Oldcastle mum.

“Liam was cycling in a community cycle over in Collinstown and he was in collision with a car. He was knocked unconscious, and they had to airlift him to Tallaght Hospital.

“His right leg was broken, and he broke ribs on his left side. Initially they were telling us he had post-concussion syndrome but as the months rolled into years, the neurologist told us that he actually had an acquired brain injury.

“He hasn’t been in paid employment since then and I’m classified as Fionnuala’s carer as well as her mum so I’m not in paid employment either so this is why we need help.

“We got a full grant from Meath County Council and had some savings and pulled together as much as we possibly could, but we still have a shortfall.

“After a lot of soul searching, we said we need to make this happen for Fionnuala so she has the space that will work for her right through to adulthood.”

The teenager is a popular character around Oldcastle where the family have received “amazing support” according to Tracey. She added:

“She is such a happy bubbly girl who loves music, books, being outside and playing.

“She likes to be with people, she’s a very sociable little person and gets a lot of attention when we are out in Oldcastle.

“When you have a child with a disability you learn that you are stronger than you ever thought possible, you also learn at times you can feel very fragile and very close to breaking but you have to get on and do it because you have no choice, and you love this child with every bone in your body.”

To donate search “Fionnuala's new space” on GoFundMe.