Paul, Sarah and Jo are doing this crazy 58k coastal walk in memory of Ellie Mae- Paul and Sarah's beautiful baby and Jo's amazing niece. Unfortunately we lost our little mito warrior after only 9 and half months, which was obviously heartbreaking and has changed the lives of all her family.

Ellie was diagnosed with Leigh Syndrome in July 2018 & just 3 weeks after the diagnosis, at just 9 months old, she passed away.Ellie always had feeding issues: she had bad reflux, could take over an hour to feed and her weight and height was always low. When she was 7 months old her parents noticed that she had stopped crying and smiling. She did not seem to be developing as well as you would expect a 7 month to do.Tests and consultations highlighted that Ellie had maternally inherited Leigh Syndrome. This meant that Ellies cells were not producing energy to function appropriately. Unfortunately, Ellies Leigh syndrome deteriorated very quickly, and she passed away at Naomi House Childrens Hospice on 24th July 2018. Every day in the UK a child is born with Mitochondrial Disease yet there are no real treatments or a cure. The Lily Foundation want to change this, and Team Ellie Mae want to help them. Please donate if you can and help them make a difference.