Our amazing daughter Bethaney sadly passed away on May 29th 2023 at the age of 24 years old from Leigh’s mitochondrial disease. Bethaney was a beautiful, caring, funny girl who lit up our world. She inspired everyone that met her with her resilience, strength and bravery while battling the many challenges mito brings.

After many years of struggling with her balance, muscle weakness and swallowing, she was finally diagnosed at the age of 16 years old with Leigh Syndrome. Given all the challenges Bethaney faced daily she still managed to live a happy and fulfilled life and never complained about her illness.

In 2018 Bethaney sadly suffered a metabolic stroke, and she was admitted to Newcastle Hospital where she spent four weeks recovering. Although it did cause some further deterioration, Bethaney went on to have another five stable years.

Sadly, in February 2023, Bethaney suffered another stroke, this time affecting her swallowing and breathing which would then see her put on a ventilator for the next three months. An MRI scan revealed that she had a lesion on her brain stem and that this time she had permanent damage. Bethaney’s health deteriorated significantly, and she tragically passed away with all her family around her. This was the most heartbreaking time of our lives. To watch your own daughter fighting for her life and then to lose your child is soul-destroying. We miss our beautiful girl every day and we will for the rest of our days. She will always be remembered for the true brave warrior she was!

We want to raise as much awareness and funds for vital research into mitochondrial disease to help other families affected by this cruel disease.