In 2010 Prenton woman Faye Wylie started her own support group called Leigh Network. The group supports and brings together families affected by Mitochondrial Diseases. As Mitochondrial Diseases are generally life-limiting, most of the people who receive support are extremely ill and so benefit hugely from the work Faye does.
Fay says, “I myself have a Mitochondrial Disease called Leigh’s Syndrome. I was diagnosed at 12 and over the years it has affected my mobility, speech and sight.
“I started Leigh Network because for me and my family there was very little support or information available. We had lost my baby brother to a Mitochondrial illness when he was just 19 months old. There was little more information available almost a decade later and I felt very isolated.”
“I started Leigh Network to maybe reach out to a few fellow sufferers who could understand my situation, but we had entire families attending our events and it has grown and grown since then! Leigh Network has given my life new purpose and I strive daily to ensure we can reach out and support as many people as possible.”
Faye has raised nearly £4,000 to enable the hosting of the Leigh Network Mito Meetings where people affected by the disease can get together for fun days out, or just a simple get together to have a chat and catch up.
Earlier today, (Sunday 26 September) Faye completed a 5k cycle fundraiser at Birkenhead Park that took about an hour for her to complete. As well as raising the much-needed funds, Faye hopes that the challenge will help raise awareness of Mitochondrial Diseases. There was a good crowd of well-wishers at the start line to cheer her on her way.
What is Mitochondrial Disease?
Every cell in the body (except our red blood cells) contains mitochondria- organelles that power each cell to produce 90% of the body’s required energy to function, grow & repair. They are the batteries that provide energy for our brains to work, hearts to heat and for just about every other bodily function imaginable. So, what happens when these batteries stop working?
Mitochondrial disease, an incurable metabolic disorder, occurs when mitochondrial failure leads to cell death. If many organ cells die, the result is organ failure. With mito, any part of the body can be affected on a cellular level. This is why every patient presents with a unique case of mito, and why it is so difficult to treat.
Mitochondrial disease is an umbrella term – many conditions result from this disease (e.g. Leigh’s, LHON, MNGIE & NARP). Depending on which cells are affected, those born with mito may experience cognitive difficulties, muscle weakness, epilepsy, heart problems, dementia … the list is endless. In extreme cases, children may die in infancy. All because no cell can function without energy.
Mito can affect anybody at any time- from newborns to adults. Most commonly diagnosed in small children, it does not differentiate between ethnicity, class, religion or age.
Mitochondrial diseases are not contagious, nor are they caused by anything a person does. They’re caused by genetic mutations – usually inherited which we do not yet fully understand.
You can donate to Faye’s fundraiser by visiting https://www.gofundme.com/f/zuvrp-leigh-network-family-mito-meetings
Image credit: www.fotopiaimages.com