2027 would have marked our beautiful Ellie’s 10th birthday but she sadly lost her battle with mitochondrial disease in 2018 before she reached her 1st birthday. To mark this milestone year, Team Ellie Mae are committing to raise £10,000 in Ellie’s memory.

Ellie’s friends and family will be taking on various challenges and events to raise this amount before Ellie’s 10th birthday in 2027. All money raised will support the work of the leading Mitochondrial disease charity in the UK, The Lily Foundation. The Lily foundation support vital research to help find a cure for mitochondrial disease and support the families affected.

As part of the fundraising, Ellie’s mum and dad are running London Marathon in April 2027. Neither of them have ran anything close to this distance before!! Paul is recovering from injuries so this will be a challenge!! Sarah isn’t used to running far without an obstacle or Hyrox station to break it up!! Nonetheless, both are committed to channelling Ellie’s warrior spirit, put themselves to the test and make it past the finish line. Please help them to meet their target by donating what you can for this important charity so close to their hearts.

Ellie’s story

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.