She Lost Her Sight and Mobility to Leigh Syndrome, So She Formed a LS Community

As reported in Liverpool Echo; Faye was just 12 she began to have difficulty walking. She didn’t realize it was her first encounter with the devastating disease that she had lost her brother to 10 years earlier, when he was just an infant. When he was young, they didn’t have a name for what happened. Not only was he not diagnosed, the disease wasn’t properly defined yet and very little was known about it.

When Faye’s walking issues started, her family knew the pre-teen may have a greater issue. Her tests gave her family an answer: she had Leigh syndrome.

Leigh Syndrome

Leigh Syndrome is a rare neurological disorder that causes the deterioration of motor skills and mental abilities. Early symptoms including difficulty swallowing, vomiting, and diarrhea, begin during the first years in life. As the disease progresses, it tends to weaken muscles and cause dystonia and ataxia, causing the patient to struggle moving. In the later stages, it can paralyze eye muscles or cause rapid eye movement and difficulty breathing.

The disease progressively made movement difficult, so she now moves around using a wheelchair. As she aged, the disease progressed, and at 23, she lost her vision. This was a really hard loss, as she had a fervent appetite for reading. Her mother said this was the hardest part of the disease for her.

Her Campaign for Awareness

Her mother explained that Faye wants to bring awareness to the little known disease. She said while it is rare, it’s still affecting a wide community of patients, many of whom they’ve met with. When she was first diagnosed, she had difficulty finding others like her though, making the experience lonely. To create a community space for the disease, she created the Leigh Network in 2010. The group brought together affected families from across the nation to fund raise for research on the disease. Her mother explained to Echo, “When she was growing up, Faye felt very isolated especially when she finished college so she founded a network to meet other people with Mitochondrial disease. For Faye this is her job and what she devotes her time to doing to raising awareness of the condition through Leigh Network.”

While the events she planned to raise awareness in the upcoming months have been cancelled due to coronavirus, her mother explained she has still found a way to be involved. She spent 10 hours in one day in quarantine peddling to fund research for her organization. Her mother explained that while she cannot ride a bicycle due to balance issues, so she uses a pedal machine instead. Every day she pedals two hours in her effort to raise awareness for Leigh syndrome.

What are your thoughts on the findings on Faye’s story? Share your stories, thoughts, and hopes with the Patient Worthy community!

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