Team Isla Ruby
Isla Ruby is our beautiful daughter who was only nine months old when she passed away from mitochondrial disease, something we’d never heard of until we were in Alder Hey Hospital.
Isla was full of laughter, smiles and cheeky faces. She had beautiful blue eyes and a very infectious laugh.
Ryan took Isla to our local hospital on 21st June as she was lethargic and very sleepy. They quickly discovered she had fluid around her heart and we were rushed to Alder Hey. We had five weeks of every test possible with the possibility of mitochondrial disease looming over us. Eventually a muscle biopsy revealed it was mitochondrial disease that had caused heart failure.
We had to say goodbye to our beautiful girl. Hundreds and hundreds of tests and two chances on ECMO were not enough to help our daughter.
Since we found out about this disease we’re shocked to learn how it’s not really talked about that often or understood by many people.
Every other day in the UK a child is born who will develop this devastating condition. Currently there’s no treatment or cure and this needs to change. We’d like to spread awareness and keep our baby girl’s memory alive and try to find a cure for this disease.
Please, if you can, take on a challenge in her name and raise money to support other families affected by mitochondrial disease and fund important research to find a cure.
Isla Ruby’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
