Ellie The Warrior Princess

13 Sep, 2024

Ellie was a fighter from birth. Born in October 2017, a lack of oxygen at birth meant she needed to spend the first week of life in intensive care. This early battle in life would later be a blessing in disguise as it meant she required regular neurological reviews to review how her brain and movement developed. Ellie’s early months were mainly happy. She cried, babbled and smiled like any baby does and loved baths with her big sister, kicking her legs to music and chatting away with her mum and dad. 

Unfortunately, however, our warrior princess always battled feeding difficulties. Professionals initially put this down to a possible cow’s milk allergy or issues with reflux. Over time, however, it eventually became clear that there was another reason for why even very high calorie feeds could not help her to grow. Ellie always had difficulties sleeping and found some body positions uncomfortable: some of her early neurological reviews indicated some potential muscle weakness in her core but it was not considered a concern at this point. 

At the age of 7 months, not long after battling a chest infection, Ellie the Warrior Princess started to lose some of her normal baby abilities. She seemed to be crying less and less, unable to bring herself to laugh at being tickled and soon lost her beautiful beaming smile. Her parents had some little niggles at the back of their mind that there was something not quite right. One night, during a normal bath time routine, their suspicions were confirmed when Ellie’s toe got badly hurt and she did not react. When this was discussed with Ellie’s neurologist the next day it became clear that Ellie needed tests to understand what was happening. 

After blood and MRI tests it was shown that Ellie had a potential metabolic disorder that affected how she processed energy. Her little body no longer had the energy to cry or feed properly. Further tests revealed Ellie had Maternally Inherited Leigh’s Syndrome: a life-limiting, progressive and incurable mitochondrial disease. For Ellie, 99% of her body’s mitochondria (sometimes referred to as the body’s power houses) were affected. In other words, only 1% of her mitochondria were functioning correctly to power her vital organs. 

Within a few weeks of receiving a Leigh Syndrome diagnosis Ellie could not keep any of her feeds down at all despite now having a nasogastric tube. She therefore needed to be admitted into hospital. It was not clear whether Ellie had developed a stomach bug, whether her recent nasogastric tube had upset her stomach or whether this was one of the first signs of her body shutting down. Nonetheless, after a long weekend in hospital it became clear that the warrior princess could sadly no longer fight any more battles. A few days later, in the supportive surroundings of the local children’s hospice, Ellie passed away in the loving arms of her parents. 

Ellie has left behind a legacy of strength and determination. Her warrior spirit lives on in her parents and sister who do what they can to fight mitochondrial disease and raise funds and awareness for this awful disease.

You can learn more about Ellie’s story at Ellie Mae’s Legacy (elliemaeslegacy.com)