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. 

No? Well neither did we! But when Libby was born in 2017 and died 2 hours later, this disease became our reality. 

In every way our beautiful girl was perfect; in the time between being a dream and being born her spirit was one not to be messed with; stubbornly strong, crazy resilient right until she found something she could not beat.  It's trite, but if she would have lived, she would have been limited by nothing but her dreams.

We were told that her version of this disease had not been seen before... in the world.  She is now part of research into this disease, in her death there is light. She will help more people than we could have ever hoped her to. 

I DON'T run...ever...even if there's cake at the end!! And I LOVE cake!! But when Libby died our little team promised each other we would do things that scare us - when your world falls apart even getting up the next day is scary. Well this is my scary thing! 

When we were told about the disease that took Libby we were told that we were lucky in a way; we were lucky to have a coroner that took a chance because their instincts told them that there was something other than bad luck involved in Libby's death. Lucky that they knew where to send us to get an understanding of what had gone on, and the doctors we met that day introduced us to The Lily Foundation. 

The Lily Foundation was founded in Lily's memory, having lost her battle to Mitochondrial Disease at just eight months old. They know what this feels like.

The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today. Please help me to help them fight Mitochondrial Disease a fight that is for both hope and answers, for Libby and anyone else affected.