Mother had to fundraise to get palliative care for her dying six-year-old daughter

The mother of a six-year-old girl, who is approaching the end of her life, had to set up a GoFundMe page to fund her daughter’s 24-hour palliative care needs.

Daisy McDonald has Rett syndrome, which is a genetic neurological condition. She was discharged from hospital 13 days ago with an expected 24 hours to live and transported to her home in Templeogue, Dublin from Tallaght hospital via a Garda-escorted Bumbleance. Her mother, Lynn McDonald, was distressed to discover the HSE did not provide the care she believed would be in place.

“Unfortunately, I discovered hospice care in the home is not something provided to children in this country,” said Ms McDonald. “The HSE response to my request for 24-hour support for my child was, ‘if she’s that sick she should be in hospital’. The hospital have already stated there is no more intervention for Daisy.

“The level of care Daisy receives at the moment is similar to ICU. Because there’s no more intervention, everything is just management now. It’s trying to manage her seizures, trying to keep her temperatures down, and the biggest part is Daisy’s chest at the moment – she needs constant suctioning around the clock.”

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Daisy, who had been cared for at home, was taken into hospital for five days. She had been 72 hours in a coma when she was discharged.

“Daisy needs 24/7 around the clock care and the reason she needs it is because I need to be her mum for the first time ever. I’ve been her carer, her advocate, her PA, her consultant. I’ve been her educator. I’ve taken on every role for every service that has let her down and for the first time in both our lives I just want us to be mam and daughter.”

Bridging the gap between the nursing hours provided by the HSE and the nursing hours required to allow the family make the most of their time left together proved impossible, however, on Ms McDonald’s carer’s allowance income.

“It has meant that I have now had to turn to the public and thank God I did. The level of support and compassion and understanding that’s out there for myself, Daisy and Ellie [Daisy’s sister] in this situation has literally lifted my heart and my spirits. For the first time in this country since my child came into my life, I feel supported. It’s a crying shame that it’s at the end of Daisy’s.

“I’ve been let down by the system, Ellie’s been let down by the system. Daisy’s been forgotten in the system. There is nothing in place for families like ours when you’re facing our situation.”

‘Extremely grateful’

The public response to the GoFundMe appeal over the past few days has been overwhelming, with the €20,000 target already surpassed. McDonald says she is "now able to give Daisy the level of care she needs. That's not the services that have done it, that's the Irish people and I am extremely grateful to each and every person, not only for the financial support that's come in, but for the words of comfort and encouragement".

McDonald believes the HSE should provide 24/7 palliative care “for any child as they approach the end of life. For every single child who is in this situation. And it’s not just providing it to the child themselves, it’s providing it to the family so that we can actually reintroduce some quality into their lives”.

“The hardest part of our journey has been the continuous daily battles with the HSE. It’s flawed from the ground up. The only part of losing Daisy that I will be able to bear is no longer having to rely on a system set up to work against us and break us down, time and time again.”

On Wednesday, the HSE said it “cannot comment on individual cases”.