Team Ellie Mae
Our beautiful warrior princess, Ellie, was diagnosed with a mitochondrial disease called Leigh syndrome in 2018.
Ellie always had feeding issues, difficulties sleeping and slow development. She was small for her age with low muscle strength. When she was just seven months old, we noticed she had stopped crying and smiling. Tests and consultations tragically revealed that Ellie had maternally inherited Leigh syndrome, and 99% of the mitochondria in her cells were affected. This meant her cells could not produce enough energy to function properly. Unfortunately, Ellie’s condition deteriorated very quickly after her diagnosis, and she peacefully passed away at a children’s hospice in July 2018.
Before Leigh’s disease took over, Ellie loved kicking her legs to music with her sister, playing in the bath and babbling along to episodes of Ben and Holly. She was a truly beautiful girl with perfect, big brown eyes, long eyelashes and soft, carrot-coloured hair.
Mitochondrial disease has turned our world upside down. We are utterly devastated that there is currently no cure, but we want to carry on Ellie’s warrior spirit and fight on her behalf. This is why, in her precious memory, we are passionately committed to raising vital money to support the incredible work of The Lily Foundation.
Sarah, Paul and Phoebe (Ellie’s Mummy, Daddy and big sister)
How to support Team Ellie Mae
Ellie’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.
