Ellie Mae was beautiful. Ellie Mae was special. Ellie Mae was loved more than anyone. Ellie Mae had Leigh Syndrome.
I am Ellie Mae’s mum and I have set up this website and the Ellie Mae Legacy to raise awareness of Leigh Syndrome, a rare and severe neurodevelopmental disorder which effects the way the mitochondria in a person’s cells can process energy. Leigh syndrome is a rare mitochondrial disease, affecting around 1 in 40,000 children. When we were first given the diagnosis of Leigh Syndrome we looked for information on how the disease would progress and what this could mean for Ellie but could not find what we were looking for. The truth is that each child with Leigh Syndrome will present with different symptoms although it often always involves elements of muscle weakness, developmental delay and feeding difficulties and may also affect functioning related to breathing, the heart and the eyes.
In this website I present our warrior princess’s story in the hope that it can help parents who may have been given this diagnosis or those that may be concerned about their child’s development.
Unfortunately, there isn’t currently a cure for Leigh Syndrome (though researchers are working on understanding more about mitochondrial disease). As part of Ellie Mae’s Legacy I am committed to raising awareness in those that may influence and impact research needed to help find a cure. Click on the Ellie Mae’s Legacy page to find out more about how I plan to do this.
Please feel free to contact me.
Ellie Mae's Legacy 