Finding Hope Amidst a Debilitating Disability

The diagnosis

I was a happy, healthy child living on the Gold Coast, Australia when my sister, who is 18 months older than me, started having trouble walking. We would regularly walk the few blocks from our house to the Broadwater and her unsteady gait became more and more obvious. My mum, determined to get to the bottom of it, took her to several doctors. When I was 10 years old the diagnosis was confirmed and my parents were devastated. Neither my sister or I understood why our mum kept crying - so what if my sister was going to get a wheelchair one day? Wheelchairs are fun! So what if the doctor said she was going to die before she was 20? As my sister told our parents, 'that's heaps old!' The doctors told my parents that I should also get tested, as the condition was genetic. I wasn't showing any symptoms but a couple of weeks later it was confirmed that I too had the condition. My sister and I had no idea about what we were facing...

As we came to learn, we were diagnosed with Friedreich Ataxia (FA), a debilitating, life-shortening degenerative neuro-muscular disorder. It would lead to a loss of muscle co-ordination, fatigue, vision impairment, hearing loss and slurred speech, scoliosis (curvature of the spine), diabetes and serious heart conditions. There was no treatment or cure and no hope.

Embracing my challenges

High-school was a struggle for both of us but with a support network of family and friends, we both graduated and went on to university. However, I could not seem to face FA head-on. I didn’t want to acknowledge I was in a wheelchair and could not walk, I didn’t want to acknowledge the challenges I was facing and I absolutely did not want to be called ‘disabled’. One day, I woke up to reality and realised I lived a very unique life and that if I was not going to do something important with it, I was wasting it.

I am now 25 years old, a university-graduate, a business-owner, a FA ambassador and advocate, I am on the board of a support group for FA and I live my life out loud. I help people in the FA community in any way I can, I organise fundraisers and nothing can dampen my hope for a treatment or cure. I show through my life that disability is no boundary. I embrace my challenges and I think to myself that this is exactly what I was born to do.

By Samantha Dwyer