On 12th April, we will be running the London Landmarks Half marathon as part of Team Lily, in memory of our beautiful mum.

In September 2021, at just 46 years old, our mum began to lose the ability to use her arms and legs. Over the following months, she progressively lost the ability to use them and continued to deteriorate. As a family we saw how quickly this condition changed not only her life but ours too. She spent the next 17 months in five different hospitals across the country before being discharged home in March 2023 with 24 hour care. Despite being discharged home, Mum continued to have multiple admissions to Addenbrookes and Papworth hospitals.

After years without answers, Mum was finally diagnosed in February 2024 with LHON+, a rare mitochondrial disease that causes damage to the nerves leading to paralysis and vision loss.

Mum sadly passed away at the age of 48 due to complications of LHON+, after a strong fight with the condition that completely changed her life.

 LHON is a maternally inherited mitochondrial disease meaning that we are both carriers of the LHON+ mutation. While there is currently no cure, there are continuous developments in research for new treatments to slow down the progression of the disease.

The Lily foundation was founded in memory of Lily, who lost her life to mitochondrial disease at just 8 months old. It is the UK’s leading charity dedicated to fighting mitochondrial disease and supporting families affected by these life limiting conditions.

Our Mum was an inspiration to everyone around her and even during her illness she showed unwavering strength and selflessness, holding our family together through the most difficult times. Mum, thank you for your endless love, kindness and support always, we hope we continue to make you proud every day.

We would be so grateful for any donations to The Lily Foundation, helping to fund research and support families affected by mitochondrial disease.🩷

Love

Zoe and Hannah x