My niece, Ellie, was diagnosed with Leigh Syndrome in July 2018 and just 3 weeks after the diagnosis, at just 9 months old, she died.  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 Ellie’s cells were not producing energy to function appropriately. Unfortunately, Ellie’s 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.  I run and I have been lucky to be given a ballot place for this years London marathon, so as I commit to training hard and suffering through the 26.2 miles I know it is nothing compared to the pain the families that live with Mito endure. Thank you for reading my family’s tragic and unfair story but please donate if you can and help the Lily Foundation make a difference.