The Lily Foundation was founded in Lily's memory, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today.

Did you know every twenty minutes a child is born who will develop Mitochondrial Disease by the age of 16! There is no cure for this disease which is for many, debilitating and life limiting.

Connie, was born in January 2025. She was sick from birth and spent her entire life in the hospital. At two weeks old, her family were told she had ‘mitochondrial disease’. Sadly, she died at 4 weeks and 4 days old after developing sepsis and suffering a neonatal collapse. Following Connie’s death, genetic testing and muscle biopsy results confirmed that she had ‘Leigh Syndrome' a type of Mitochondrial Disease.

Please stand with me in memory of Connie for The Lily Foundation and fight Mitochondrial Disease and fight for hope.