A mother whose young daughter died last weekend of a rare syndrome has said she is hoping to enter local politics to address deficiencies in the services available to sick and terminally ill children in Ireland.
Daisy McDonald Byrne, of Templeogue in Dublin, lived an additional four years after her mother Lynn was informed in January of 2020 that her daughter would die in a matter of days.
The nine-year-old, who died last Sunday at 1am, was in the advanced stages of Rett syndrome. She was non-verbal and unable to use her hands and legs or to sit unaided. The youngster was tube-fed and had osteoporosis, scoliosis and multiple femur fractures.
Lynn McDonald says that she wants to implement seismic change in Ireland in memory of her daughter.
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“We need change in this country. I have been angry for a very long time as to how my country treated my beautiful angel. I think every child in this country who suffers needs people to start getting angry and standing up and saying, ‘I have had enough. It is time for change.’ As families we deserve to be able to make choices.”
She says that there is a need for additional support for families who would like their terminally ill children to die at home.
Lynn also indicated that she spent huge amounts of time fighting for services throughout her daughter’s life.
“Every time I think of Daisy I smile. But the anger that is inside me I need to use as fuel for change. I have asked to put my name forward for the local elections. Because by God, I am ready.”
A celebration of life was held for Daisy in the chapel at Newlands Cross crematorium in Dublin on Wednesday. A private cremation followed.
Ms McDonald cared for her daughter around the clock. She says that Daisy displayed enormous “resilience and courage” during her short life.
The Daisy’s Days page on Facebook has 26,000 followers. Lynn posted a video message earlier this week where she thanked all those who had offered her assistance over the years. She is also extremely grateful to nurses and their family GP for their devotion to her daughter.
Her teenage sister Ellie won a Tallaght Person of the Year award for her assistance to Daisy during her life.
Daisy had an extreme form of Rett syndrome which is a rare neurodevelopmental life-limiting condition. She communicated only with her eyes and had a moderate intellectual disability. The syndrome affects girls almost exclusively and is present in one in 10,000 births. Daisy was formally diagnosed when she was just a year old.
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