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 Syndrome 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 worlds 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).