Lily with her companion Bunny
About Lily Daly
Lily was born on the 21st of June 2019. When she was 7 weeks old she entered in to a world that became so familiar to both Lily and her parents for the next two years and that was the Heart Centre in CHI Crumlin. Lily had her first open heart surgery at 10 weeks old.
Her parents were told the outcome would be 50/50 but thankfully the surgery was successful, and Lily and her family returned home to Kerry in October 2019. Four weeks later, Lily and her parents were back up to Dublin in a traumatic ambulance blue light journey supported by a Garda escort. Lily’s parents were told the most devasting news that Lily had scar tissue around her heart resulting in a very rare condition known as Pulmonary Vein Stenosis a condition that unfortunately there is no cure.
Lily’s parents were devasted and like any parent could not accept this news and did not accept it. Lily refused to give up and in conjunction with support from The New York Presbyterian hospital Lily underwent further Heart surgery that December in Crumlin. The best Christmas present was returning home to Kerry just in time for Santa on Christmas Eve.
Lily and her parents had several more trips to the Heart Centre in Crumlin after this and many overnight stays. It became a familiar and safe place for Lily and her Family. On each long term stay at the hospital Lily’s family were fortunate to avail of the services of the Ronald McDonald House which became a Home away from home.
In August 2020 Crumlin advised that they had exhausted all medical options available to them. Thankfully Lily got to travel to New York Presbyterian Hospital in November 2020 and underwent extensive open-heart surgery to remove the scar tissue. This was a challenging time for both Lily and her family who were on the other side of the Atlantic away from her sister Sarah back in Kerry and in the height of Covid but all that didn’t matter once Lily was recovering. Lily and her parents returned to Ireland just in time for the New Year and had a second visit from Santa that year.
On Friday 26th February 2021 Lily Daly’s amazing blue eyes closed for the last time. Her devasted parents vowed to keep her memory “alive” and inform the world of Lily’s special character and difficult challenge and also to help other parents and families with sick children.
Lily’s mom Caroline added “Some people never meet their heroes but I gave birth to mine. So from this The Lily Daly Foundation was born”.
The Lily Daly Foundation is currently at an early stage but the aim is to support families going through similar challenges and journeys Lily and her family went through.
Lily’s parents know what it’s like to be in the hospital and to hand your child over to the medical team. It’s the most traumatic experience a parent can go through and that’s why The Lily Daly Foundation was established to assist and support similarly affected families.
The Lily Daly Foundation plan to run events over the next few years to build on the foundation and to support families in hospital with heart related issues. The first of these events will be “Lily’s Pink Challenge” where all proceeds raised will be directed to both the Heart Centre in Crumlin Childrens Hospital and Ronald McDonald house two facilities which Lily and her family have a strong association with.
After losing their daughter Lily in February 2021 at the age of 21 months, the Daly family were determined to do something real, something meaningful and something that would have a long-lasting effect in helping and supporting other families throughout Ireland that also have kids with heart problems. Hence, they came together to set up the Lily Daly Foundation in 2023.
Our Mission
The Lily Daly Foundation’s primary mission and purpose is to support parents when their child is in hospital with Heart related issues.
Families of Children diagnosed with Heart issues are completely and utterly focussed on the sick child. We know this first hand how you need to park your life at the hospital door and enter a new medical world.
Lily with her Mom Caroline, Dad Mike & Sister Sarah.
Our Vision
To support, comfort and help parents and their kids in hospital that are going through heart related issues.
Where a specific wellness care pack is provided to the parents which will provide some comfort during their difficult stay in the hospital.
To support and assist with the development of more accommodation options and supports for parents staying away from home and close to the hospital while their child is in hospital.
The next step is to officially register the foundation as a charity with the sole aim of supporting and helping as many families and parents as possible across Ireland in the years ahead.