‘Palliative care for children in Ireland is non-existent’

By Mary Dennehy

THE mother of local hero Daisy McDonald has been forced to fundraise for her young daughter’s 24-hour palliative nursing care.

Little Daisy (6) has Rett syndrome, an extremely rare genetic neurological developmental disorder.

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Daisy with her mother Lynn

Over two weeks ago, Daisy was brought home from hospital by a Garda escorted Bumbleance, with the six-year-old having an expected 24 hours with loved ones.

However, Daisy has defied the odds and this week managed to get out of bed for a little while, watch a film and hold her pet rabbit.

Daisy, who is cared for at home on a full-time basis by her mam and big sister Ellie, was admitted to hospital in early January, and had been in a coma for 72 hours when she was discharged two weeks ago.

On arriving home however, Daisy’s mam Lynn discovered that the HSE does not provide the palliative care they believed would be in place for a child approaching end of life.

“When we came home we had no idea what we were doing, we didn’t know what was going to happen… we were just going hour by hour”, Lynn said.

“Palliative care for children in Ireland is non-existent.

“The HSE does not step in to provide nursing for when a child is facing end of life.

“It’s absolutely devastating.

“There should be some supports in place to help families and the child… make sure the child is not in pain and not scared.

 “But, there’s nothing, zero.”

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Daisy on her visit to Tallaght Garda Station

According to Lynn, Daisy requires non-stop, 24-hour care and monitoring, which includes managing her seizures.

The HSE, through Daisy’s standard home care package, does provide the family with a nurse, five nights a week.

However, according to Lynn, agency nurses are not always available to cover these shifts.

Due to the level of care required by Daisy, Lynn said she’s had no option but to set up a GoFundMe page to pay for day nurse care and the nights not covered by the HSE.

According to Lynn, this nursing cover is necessary for Daisy’s needs, and also for Daisy, Ellie and Lynn to spend time as a family.

This support, thanks to the public’s donations, has now been put in place, with nurses trained and ready to go.

“The people of Ireland have done this for us, and we’re so grateful. The peace of mind is immense.”

Lynn said that alongside providing the necessary nursing care for Daisy, she had hoped when they came home from hospital that she could spend this time being Daisy’s mam.

“I just wanted to love her and be her mum for the first time ever but I had to battle the system again and go outside the walls and ask for help”, Lynn said.

“Daisy is never hard work or difficult, I adore being her carer and mum.

“It’s having to deal with the system over and over again.

“The HSE is fully aware of our situation.

“We need to start a conversation, acknowledge that there is nothing in place [for families caring for a child that needs palliative care at home].”

Lynn stressed that there is also a need to provide supports to the siblings of children who need palliative care.

In recent weeks, Daisy’s family and friends have all rallied around, especially her pals at Tallaght Garda Station – who selected Daisy to be part of An Garda Siochana’s Little Blue Hero programme.

“Daisy is a Little Blue Hero”, Lynn said.

“When we were in hospital, the guys at Tallaght would come in and sit with Daisy, offer me a coffee.

“They’re always there…and we can’t thank them enough for everything they do.”

Daisy is seven on February 18, with a special party planned for the Little Blue Hero in Tallaght Garda Station.

Lynn also thanked Our Lady’s Hospice in Harold’s Cross, which provides a phone support service for families of young children and Daisy’s GP Dr Sarah Hennessey.

The family also wished to thank the public for their help and support, and for having “such a big heart”.

At the time of The Echo going to print, Daisy’s palliative GoFundMe campaign had reached more than €33,000.

Lynn stressed that any money not used on 24-hour nursing shifts, will go towards supporting other children in need of palliative care.

Follow Daisy Days on Facebook or the Palliative nursing care for Daisy GoFundMe page

A comment from the HSE was not received in time for print.

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