Daisy McDonald is an incredibly brave 4-year-old who is battling Retts Syndrome, a rare genetic neurological developmental disorder.
With the support of her dedicated family Daisy has been fighting the disorder since she was born, already spending plenty of time all three children’s hospitals during her short life.
Her mother, Lynn, explained that while Daisy is continually battling Retts Syndrome she is an “adorable little girl” with a dazzling smile.
Lynn said: “She suffers daily seizures and extreme irritability along with body spasms that can be excruciatingly painful and yet she remains the cutest, bravest most adorable little girl with a heart and smile to melt the toughest of the tough.”
Her 9-year-old sister, Ellie, is currently Tallaght’s ‘Heart of Gold’ title holder – an award which was presented to her for all she does for her little sister.
Daisy, who is non-verbal, does not have the use of her hands, is unable to sit unaided, crawl, stand or walk and is tube-fed, earlier this month the family discovered that Daisy would need a ventilator 22 hours a day.
Lynn said: “We have also started Daisy’s Bucket List and want to help her achieve and experience as much beauty, joy and excitement in her short little life. Time is precious from here on!”
On June 28th Daisy’s family, who live in Bohernabreena, will hold a huge fundraiser at the Kiltipper Café and Bar with music, comedy and entertainment.
The fundraising evening will feature Dave Young, Chanto from Giz a Laugh and Norris Stephens who is known as Ireland’s George Michael. Darren Conway and Dean Forster will also be appearing at the benefit night.
Lynn told InTallaght: “The plan is to get Daisy home on the ventilator as soon as possible. We are awaiting an updated home care package to help during the night. She will be transferred to LauraLynn Children’s Hospice first to help with the transition then on to her own bed.”
“The fundraising will help us create a unit outside where we can store the overflowing equipment and medical supplies and, if financially possible, give daisy a safe sensory and therapy area as space in our little cottage is non-existent and reaching crisis point.”
Tickets for the event are priced at just €10 with a special raffle on the evening, tickets starting at €5, and all support is welcome. Comedian Dave Young recently visited Daisy in Tallaght Hospital to reveal all about the benefit night…
He described Daisy as a “wonderful, brave and courageous” little girl who has a daily struggle on her hands living with Retts as well as Mitochondrial Disease.
He said: “Daisy’s mum and sister have embraced this journey Daisy is now on and have started her Bucket List to fill her days with every dream a little 4-year-old hero warrior could possibly imagine!”
Tickets for the event are available from Kiltipper Café and Bar or by visiting Daisy’s Days. The family has also set up a Go Fund Me page here: https://www.gofundme.com/daisys-days to help make some of Daisy’s dreams come true.