Remembering Phoebe
On November 14th 2021, at 7:35pm, our beautiful baby girl Phoebe Grace was born.
To begin with, Phoebe seemed like a healthy child but as the months went on, we realised she wasn’t developing as quickly as other children we knew.
We started to notice changes in Phoebe, like getting nystagmus, not being able to support her own weight when sitting down and losing weight.
After being advised to go to A&E, and after a few observations, she was admitted when she was only 10 months old. After spending a week in hospital with countless tests and a visit to a metabolic team at Guy’s and St Thomas’ in London, Phoebe was diagnosed with Leigh syndrome.
Phoebe was always a happy baby who had the most beautiful smile, but after her first birthday around Christmas time, she started to deteriorate and eventually lost her ability to smile, laugh and even cry, which was heartbreaking.
Despite everything she went through, Phoebe was so brave and strong, and she brought so much joy to everyone she met.
After nine excruciating months Phoebe lost her battle with mitochondrial disease and sadly passed away in our arms on 2nd May 2023.
Please donate or take on your own fundraising challenge to help us help families like ours. Together we will find a cure.
How to support Remembering Phoebe
Phoebe’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.
