Story
Our Story
In March 2024 our son was diagnosed with Mitochondrial disease (specifically PolG) aged 2 ½ following lengthy investigations into his global development delay and low muscle tone. In October 2024 our daughter was also diagnosed with PolG aged 11 months. PolG is degenerative with no treatment and no cure. Since first creating this page our son has developed seizures as a result of his condition.
It is impossible to describe what it is like to carry this knowledge about your own children around with you, while facing the day-to-day challenges of juggling work, paying the bills, countless hospital appointments and dealing with school selection for special educational and medical needs.
If I could take on their disease myself to save them, I would do it in a heartbeat.
We have been fortunate to receive fantastic support from the Lily Foundation. Their mission is to support people whose lives are affected by the condition, raise awareness and fund research into its prevention, diagnosis and treatment.
We have really benefitted from the ability to network with other families facing the same challenges as us and the knowledge and news of the latest research projects, all enabled by the Lily Foundation.
What is Mito?
Our cells contain structures called mitochondria, often described as the ‘batteries’ of our cells, which create the energy needed for our bodies to function.
In people with mitochondrial disease, these ‘batteries’ don’t work properly, causing energy shortages that can impact almost any part of the body, including the brain, heart, muscles and digestive system.
Mitochondrial disease is a complex and difficult-to-diagnose condition. Symptoms vary widely from person to person, but often lead to severe physical and developmental challenges. There is currently no cure.
Check out this short video for a brief summary of mitochondrial disease (mito)
If you would like to find out more about PolG specifically, you can read more here: PolG Reference Guide
Mitochondrial dysfunction has been linked to diseases including dementia, Parkinson's, epilepsy and cancer. So research stands to benefit not only those with mito but potentially millions of others too
My Goal
I am running the Bath Half Marathon 2026 and I am aiming to raise £100 per km that I run for the Lily Foundation. Reaching this goal will really help. Any donation however small would be greatly appreciated.
- £10 helps people access mito disease information from the Lily website
- £25 helps fund a medical research for one hour
- £50 helps to fund patient access to vital patient information days
Together we can make a difference
The Lily Foundation
You can find out more about the Lily Foundation here:
To read about some of the pioneering research that they are helping to fund click here: