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 decided to make something positive out of my situation. 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.
Leigh Network recognises that Mitochondrial Disease can affect anyone at any age. Our families are made up of babies, older children and adults and we wanted to ensure that everyone's needs and wishes are catered for when we get together. We arrange gatherings all over the UK. These can take different formats, from a formal meeting with guest speakers (who specialise in Mitochondrial Diseases), to a family fun day out! We try to make these days as fun as possible for the children and we want to help families to make magical memories.
These gatherings are usually the only opportunity for our families to physically meet and support one-another. As you can imagine, these can be extremely emotional days but they have always ultimately been very rewarding, with positive outcomes for all.
To facilitate these gatherings, we at Leigh Network relentlessly fundraise and try to raise awareness of Mitochondrial Disease. The funds we raise from, e.g. selling homemade cards and trinkets, are divided between venue-booking, equipment-hiring, tickets, refreshments etc. We have always carried out these meetings on a tight budget and this has proven restrictive in what we can do at times.
We also always donate a proportion of funds raised to Newcastle University, which is where most Mito research takes place at this time.
We are asking for support to continue to be able to host our meetings and days out. I will continue to fundraise through my Awareness Days, however in order to be able to make our family days out as memorable and special as possible for children from all over the UK, we need more funds to be able to support our families to cover travel and accommodation costs when necessary.
As a person affected by Mitochondrial Disease I can't stress enough how important these meetings are for the families we work with. We share stories, updates and hope and we are eternally grateful to those who support us to be able to have these meetings.
From the bottom of my heart, thank you to everyone who has supported us and who is considering supporting us.
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