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AUTUMN 2024 InTouch | 19 When Lydia Wilson was diagnosed at age 9 with Friedreich’s Ataxia, she was unsure what the future would hold, and felt like her life did not have much of a future. Lydia’s mum, Ruth, a trained nurse, knew early on something wasn’t right when Lydia was learning to walk. As Lydia got older and started to suffer from bed wetting episodes, falling over and stumbling, Ruth pushed her GP for a pediatric referral. Tests and an MRI scan were done confirming her diagnosis of Friedreich’s Ataxia (FA). Coincidentally, Lydia’s Pediatrician had just diagnosed a girl of similar age in New Plymouth so was very familiar with the symptoms and characteristics of the condition. “At Primary School, I found it hard to accept I had a disability when others were fine”, Lydia said. When I first joined the Muscular Dystrophy Association of NZ, she recalls her local Fieldworker visiting and providing vital information on her condition to her school. FA is a slow, progressive disorder of the nervous system and muscles, which results in an inability to co-ordinate voluntary muscle movements. This condition is caused by the degeneration of nerve tissue in the spinal cord and of nerves that extend to peripheral areas such as the arms and legs. YOUR CONDITION IN REVIEW When Lydia Wilson was diagnosed with Friedreich’s Ataxia just over 20 years ago, she knew then and there that her life would be full – and it certainly is! Lydia’s living a full life, one step at a time Keeping her muscles moving and being upright is a daily goal of Lydia’s. “I enjoy being upright and mobile and thanks to my carers, I use my walking frame daily to walk”, she says. Lydia, now 28, lives with family in Inglewood, returning home after she had surgery on her toes and Achilles to lengthen her Achilles on both legs. The surgery was a difficult decision to make with Lydia’s neurologist finally saying it should help the muscular part of my disability. “It greatly improved my ability to walk although I could not live alone afterwards”, she says. Lydia is in a wheelchair full time and has a rail on her bed for assistance with getting in and out. Not only does Lydia rely on her family for assistance with showering, putting her in and out of her night splints and getting ready, she has a group of five dedicated carers who rotate visiting 3 times a day, every day too. “I can’t thank my dedicated father and mother enough for helping me with walking daily and also my sister who is training to be a physio”, Lydia says. Despite the physical limitations Lydia now faces, she doesn’t let the rare disease take over her life. Up until recently, Lydia held down a part- time job at Powerco, but had to end her employment due to fatigue, a symptom of FA. “The job was fun, and I enjoyed the responsibility of helping people with their power and I also enjoyed getting paid” she says. Lydia now dedicates her time volunteering on the Central Region branch committee and is currently the Vice-Chairperson since the 2023 AGM. “I really enjoy keeping busy and volunteering and am looking forward to the upcoming branch activities and events”, she says. Lydia’s life is full and says the key to living with Friedreich’s Ataxia is taking life one step at a time. “Push through because things can seem hard to do but there’s always light at the end of the tunnel. Never know how much joy there is in life until you get there”. “Push through because things can seem hard to do but there’s always light at the end of the tunnel. Never know how much joy there is in life until you get there”. Above: Lydia (centre) with her parents Ruth and Hugh Wilson.