Our beautiful baby girl, Elodie Alice Clarke, the best daughter, little sister, granddaughter, niece and cousin, passed away peacefully on Friday 16th October following the most amazing 15 weeks we could have asked for.

Our hearts are shattered into a million pieces. The pain of losing our baby girl is unimaginable. Elodie you were loved beyond words and more than you could ever know. We wish more than anything that we could have watched you grow and live the life that you deserved.

Elodie was heartbreakingly born with an untreatable, incurable mitochondrial abnormality that led to her being hospitalised at 10 weeks old. El fought so very hard, finding strength that no little baby should have to find. Tragically, El never stood a chance, with no cure, no treatment and no experimental options for her mitochondrial disease and the complications that brought to her.

This is every parents worst nightmare. Although we cannot change what has happened to our beautiful girl, we want to do everything in our power to make a difference. We want to help raise awareness, support research and fight for treatments to be found, so that one day, other families will be spared the unimaginable heartbreak of losing their precious baby to this devastating disease.

If you are able to make a donation in Elodie’s name, we would be so incredibly grateful. Every penny raised will help support the fight to find treatments for mitochondrial disease.

Every other day in the UK, a baby is born who may develop serious mitochondrial disease. The Lily Foundation was founded in 2007 by Liz Curtis in memory of her daughter Lily, who died from mito at just 8 months old. Finding little information or support to help her, Liz set out to provide answers for herself and others in her situation. The charity exists today to support affected patients and families, raise awareness of this little-known but incurable genetic condition and fund research into treatments and an eventual cure.