Ellie was beautiful, Ellie was our warrior princess, Ellie had Leigh Syndrome.

Our beautiful Ellie was diagnosed with Leigh Syndrome in July 2018 and just 3 weeks after the diagnosis, at only 9 months old, she passed away. Ellie always had feeding issues: she had bad re-flux, could take over an hour to feed and her weight and height was always low. When she was 7 months old we 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 and we raised concerns. Tests and consultations highlighted that Ellie had maternally inherited Leigh Syndrome and 99% of the mitochondria in Ellies cells were affected. 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. You can read Ellies story and her experiences with Leigh Syndrome here: https://elliemaeslegacy.com/the-warrior-princess-2/

Before Leigh Syndrome took over Ellie loved movement she would kick her legs to music with her sister and kick around in the bath. She also loved touch the tickle of daddys stubble, mummy nibbling her nose and her big sister washing her in the bath. She was amazingly empathetic for a baby and would get visibly upset when her sister cried or children in the hospital were upset. Ellie was also so beautiful with perfect, big brown eyes and long eyelashes and soft carroty hair.

Mitochondrial disease has turned our worlds upside down. We are devastated that there is no cure and want to carry on Ellies warrior spirit and fight on her behalf. This is why, in Ellies memory, we are committed to raising money to support the important work of the Lily Foundation.

Sarah, Paul and Phoebe (Ellies Mummy, Daddy and big sister).