Team Lillyanna
Lillyanna Rose Dove was born on 22nd December 2018. From the first moments of Lillyanna’s life, we knew something wasn’t right. There was meconium in my waters when they broke, plus Lillyanna had swallowed meconium during the labour so was monitored throughout.
Lillyanna was born at 4.59pm on the Saturday afternoon. She was blue, floppy, didn’t cry and was unable to latch on. We were assured all was fine but after a few hours we knew this wasn’t the case and so Lillyanna was taken to the neonatal unit. She spent 37 days in hospital having so many tests to try to find out what was wrong with her and what had caused her disabilities.
On 26th February 2020 we had an appointment at Evelina Children’s Hospital. We thought it was just an update, however we were told they’d found what was causing Lillyanna’s problems – mitochondrial disease. This was the first time we’d ever heard of the disease and it came as a massive shock. We’d longed to find out what was causing Lillyanna’s problems but we were devastated when we were told it was mitochondrial disease.
A year had passed since the diagnosis and we were still no clearer which syndrome was connected to Lillyanna until finally we were able to have a Zoom call in February 2021 with the metabolic team at Evelina Children’s Hospital. Scientists have compared Lillyanna’s genes to those syndromes known in the mito family and there’s been no match. They now believe Lillyanna may have another syndrome/disease which is causing her mitochondrial DNA to not perform as it should but, to date, they have no idea what it is.
When we received the diagnosis we were put in touch with The Lily Foundation, so we’ve set up this team page, through our love and inspiration of our lovely daughter Lillyanna, for anyone who would like to do a fundraiser. We’re forever grateful to everyone who’s offered us support and love through our journey so far.
Lillyanna’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.
