Lily Merritt was a beautiful little girl and despite being given days to live, she graced this world with 8 months of life. Lily had a fatal metabolic disorder, a Mitochondrial Disease. Lily was a happy little girl who treasured every moment and for someone so small had an enormous amount of courage and determination.
The Lily Foundation has been built on Lily’s strength and inspired by her fighting spirit. Our vision is to change the future and find a cure for Mitochondrial Disease.Through funding medical research projects and specialist doctors and nurses, we also aim to improve diagnosis and develop treatments . We work with hospitals around the UK, including Evelina/Guy's & St Thomas', Newcastle University, Oxford Sir John Radcliffe and Great Ormond Street/Institute of Child Health.
We are available by phone, email and in person and help connect families who then support each other. We can help fund specialist equipment or offer short breaks to Centre Parcs for affected families. We also fund family hospital accommodation to help keep parents close to their sick children.
We aim to raise awareness of Mitochondrial Disease by improving patient access to information, supporting professional training, and speaking at schools and public events. Through The Lily Foundation there is Hope!