Family want to create magic memories for brave Little Daisy
By Mary Dennehy
LITTLE Daisy McDonald has spent the past 60 nights in hospital, bravely fighting pneumonia and learning to live on a ventilator for 22 hours a day due to chronic lung disease.
Her mam Lynn and older sister Ellie (9) now want to bring Daisy home so they can create magic memories for their little hero through a fun bucket list that includes a visit to a butterfly farm, feeding the giraffes at Dublin Zoo and a sunset balloon ride.
However, before Daisy leaves hospital, the family needs the community’s support in making changes to their small Bohernabreena cottage - which involves the installation of an outdoor unit for the safe storage of Daisy’s overflowing medical equipment and supplies.
A sensory therapy space for Daisy would also be created in the outdoor unit while a hoist, necessary for nursing staff to be assigned to the family, needs to be fitted within the family home.
Daisy suffers from advanced stages of Rett syndrome, an extremely rare genetic neurological developmental disorder which presents with symptoms of cerebral palsy, autism, epilepsy, Parkinson’s disease and anxiety.
On top of this, Daisy has a secondary metabolic condition call mitochondrial disease which, combined with Retts, is devastatingly difficult on the four-year-old who as a result must now contend with chronic lung disease.
Wheelchair dependant, Daisy, whose condition has deteriorated in recent months, is also non-verbal, is tube fed and now requires continuous oxygen and non-evasive ventilation.
However, her mam Lynn and big sister Ellie, who won the Tallaght Person of the Year Heart of Gold award for the care and love she gives her little sis, have embraced Daisy’s journey and started a bucket list with every dream a four-year-old could imagine.
Lynn told The Echo: “We want to do as much fun and exciting things as possible with Daisy, and look back and know that she had the best life possible.
“It’s all little things like a visit to Fota [wildlife] park, a trip to the beach for the day, a balloon ride at sunset and feeding the giraffes in Dublin Zoo.
“However, these are little things that will have a huge impact on all of us… and we’ll have a lot of fun doing them.”
She added: “Daisy is just looking for a little bit of normality now and we want to get her home but we need to make a few changes and are hoping to get a log cabin-type unit outside for Daisy’s medical equipment and oxygen canisters.
“We would also create a sensory therapy space in the unit and inside the house we need to install a hoist, so that we can be assigned a nurse and come up with a care package for Daisy.”
To finance the unit and Daisy’s bucket list, which will require the support of a nurse, the family’s friends have organised a fundraising night in the Kiltipper Café & Bar to help make life a little less stressful.
The fundraising evening on Wednesday, June 28, will star comedian Dave Young, Norris Stephens, Ireland’s answer to George Michael, Dean Forrester; The Voice, Chanto from Giz a Laugh, and Darren Conway.
Entry tickets, which are available in the Kiltipper Café & Bar, cost €10 and tickets for the monster raffle are €5. For further details visit the Daisy’s Days Facebook or donate at gofundmepage.com (Daisys Days).
