Inspiring others that there is hope beyond our struggles

Rebekah Lyons

Hi. I’m Bec, I’m 28 years old, I’m from Victoria, Australia. COVID has changed my life and I am now located in Western Australia. I’m an Emergency Nurse, a volunteer Firefighter for my local community, I play guitar, I enjoy hiking, riding, swimming, I’ll give anything that’s outdoorsy a go.

At the end of February 2017 I found out that I inherited a degenerative gene in my family called Spinocerebellar ataxia type 3 (SCA 3), also known as Machado-Joseph disease (MJD). MJD is a progressive disorder and has a massive impact on the quality of ones life. There is no cure. My Mum had MJD, as do two of her siblings and their Mum. My younger sister and I have had genetic testing done and found out we both have the gene.

My goal is to give hope to people going through a similar situation to me. It doesn’t have to be MJD, but all people who have hereditary genes in their family, people that have watched a loved one suffer and may face the same suffering themselves. 

I want to help push for the awareness of people with disabilities. I have witnessed firsthand people being discriminated and judged because of their disability. A early symptom of MJD is ataxia, which is an unsteady gait and looks like a drunken walk. This then leads to people being mislabelled a drunk. As part of MJD you loose coordination and speech skills but remain intellectually intact. But people misread this decline in function and communicate with suffers on a lower level. People often misunderstand people with any disability.

It’s not just about creating awareness for MJD for me, it’s about empowering people who have been misjudged and mislabelled, and supporting those who care for other people. It’s about helping people understand that a disability doesn’t define who someone is, it doesn’t make them any less of a person. If you know of someone with a disability, know of someone who cares for someone else, especially a parent who cares for the other parent; cook them a meal, go mow the lawns for them, offer to drive their kids to school on rainy days, find a way to help. And for those families, allow people to help you out.

The scientific outlook for my life isn’t too amazing. I believe in a God who heals, I don’t understand why he has let this happen but I’m not going to sit back and take it; I’m going to STAND AND SCREAM. Scream about hope, scream for those who are hurting, scream that the fear of what may come will not control me.

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