Leigh Network

Welcome to Leigh Network

Faye Wylie who has Leigh Syndrome, set up Leigh Network, a registered charity, to help people with Mitochondrial Disease and their families, to help reduce the isolation that can be felt when given a diagnosis that can be so daunting. Mitochondrial disease comes in so many forms and affects each person differently. It can often therefore feel like nobody understands or can help.

At Leigh Network we welcome all with open arms and give them as much support as we can, to help them at times when they feel lost or isolated. Our families know we are always there for them. Our charity also helps raise funds for research at The Wellcome Trust based in Newcastle, with the leading specialist doctors and researchers. Using funds raised over the years, Leigh Network have held lots of family days for the families we support. We have met in various locations, including Cadbury World and Legoland- always family-friendly and accessible venues. We often have professionals come to speak to families and share any new developments in research.

Our Mission:

What is Leigh Network all about?

Faye was diagnosed at age 12. But only told the consequences of her mitochondrial diagnosis in 2008, at the age of 18 – it became apparent there was little support available. Faye and her family had so many unanswered questions and no way of knowing what to expect, what services were available to help or how to cope emotionally with a mitochondrial diagnosis when they knew nobody else who was going through it.

Unfortunately, not much had changed over the years. Fifteen years earlier, in 1993, Faye’s parents had been told that their son Samuel, at eighteen months old, had something called a “metabolic disease” and probably wouldn’t live past the age of two. He died one month later, aged just nineteen months. There was no support at that time either and the family had been left to handle everything alone.

When Faye was told of her own diagnosis, she felt she had nowhere to turn. No one should have to face mitochondrial disease alone.

This isolation sparked the start of Leigh Network in 2010.

What Leigh Network aims to do…

Offer comfort and hope to families both online and at our face to face Mito family days

Raise public awareness

Support the ground-breaking research

The Leigh Network Butterfly of Hope was created by Faye to inspire and encourage.

The eye-catching yellow and red Jackson Pollock themed wings at the top represent how mitochondrial disease often stems from a problem with an area in the brain, which can lead to neurological deterioration.

The green and purple rainbow stripes underneath are to show the serious health aspects mitochondrial disease can have on a persons life, such as epilepsy, dystonia, fatigue and mobility issues.

The green circular shapes sat below the rainbow are to show the shape of mitochondria cells. Faye has used green as it is the colour most associated with mitochondrial disease.

The rising sun in the bottom left wing is to highlight the scientific breakthroughs that research is making everyday and the hope this gives us for a better future.

The moon and star night sky in the bottom right corner is to represent that all those who have lost their fight to mito are always in our hearts and thoughts.

To help us continue to be able to contribute to the vital research at Newcastle, please donate here;
www.gofundme.com/f/zuvrp-leigh-network-family-mito-meetings