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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

exp j vernonMy name is Juanita Vernon, I'm 48 and have recently relocated to a beautiful coastal town in NSW, offering access to more services and support. My life journey of living with SMA type 3 began with a diagnosis at age 3.

Soon after I was placed in stirrup boots to prevent me from walking on my toes. Walking on my toes I had quickly learnt to lock in my knees and prevent myself from falling. I'm unsure why or when but eventually the boots became a thing of the past; as every time they were removed I instinctively got back up on my toes.

I have newspaper clippings, from when I was 8, of my father's plight to see physiotherapy continue which I received from inmates at the then Cessnock Women's Corrective Centre. As a mother I can only imagine the desperation that my parents must have felt to allow inmates to come into our home on a weekly basis. This was their only option in providing any form of treatment that may benefit me.

My teenage years were difficult as it was the first time I felt that I 'didn’t belong'. It was the early 80's and the integration of children living with disabilities into the Public-School System was new. My first year of high school saw me carried upstairs by teachers or arriving to class considerably late as I tackled the mountain of stairs. More often than not feigning an illness and staying home.

I made it through high school with an 'I'll show them attitude' and achieved results in the top 10 percent of the State. On completion of my School Certificate, it wasn't an option for me to continue onto years 11 and 12, instead I was strongly encouraged into commencing study doing a 'sit down' occupation. I began a course in Textile and Design.

At age 20 with the same 'I'll show them' attitude I enrolled in TAFE and completed my HSC. I then went on to study a Degree in Psychology at University. At the beginning of my second year I became increasingly tired, it took all my energy to attend lectures. Thinking my disability had taken hold I moved back home and soon after I found out I was pregnant with my first daughter. Two years later I became pregnant with my second daughter.

I was once told that having children was not an option for me but here I was with two beautiful daughters. I avoided carrying my babies due to the fear of falling and would spend most of my time crawling about the floor with them with everything I needed in arm's reach.

Eight weeks before I had my second daughter my dad passed away, this was also the beginning of the end of my relationship with my daughter's father. However, it wasn't until my youngest was 3 that I got the courage to go out alone. Becoming a single mother gave me no other option but to remain strong for my children, the progression of my disability just had to wait, I had two little ones that relied on me.

In 2010 I had become increasingly isolated and began to rely more on my teenage daughters to do the 'everyday stuff' outside of the home; such as pay rent and grocery shopping. It was now time to look seriously at acquiring an electric wheelchair for mobility something that I had been avoiding for years, as I refused to give into my disability. I needed to step up to continue to care for my children.

Within a year and with a greater sense of freedom and independence I began training and volunteering as a Lifeline Crisis Support person. This saw me enrol once again in TAFE and complete my Diploma in Community Services. Attending TAFE meant I had to catch the school bus, a challenge in itself!

My study enabled me to bring awareness and advocate locally and federally for the ever-increasing numbers of people experiencing homelessness. I too have been at risk of experiencing homelessness due to the lack of accessible housing and the unpredictable nature of private rental. I was recognised at the State level Training Awards and received a nomination for Citizen of the Year in our local community.

Ironically gaining independence and achieving some of my lifelong goals came at a cost. As I spent more time in my chair it meant 'use it or lose it' became my reality and my SMA progressively worsened. I now rely on my chair for all mobility, inside and outside the home. In the last six months I have been challenged daily as I struggle to continue to self-care. It's now time to seriously look at getting more personal support for me to remain independent. It'll take some serious 'head work' to get there but I'll do it.

Writing my story didn't come easy. It's much easier to focus on my achievements than my 'struggles'. The need to prove myself as worthy, the fear of appearing vulnerable, avoidance and maintaining my 'I've got this' front for those around me that I love have been ingrained in me from a young age.

For me challenges or 'struggles' are my 'everyday' but when you have no other option you 'just get on with it'. An example of this was when my daughter asked me to be with her during the birth of my granddaughter, I had no other option but to travel at 4.30am, in the dark, in the middle of winter approximate 2km to be there. I had no other option as there was no accessible transport available at that time of the day.

Finally, by putting a face to adults living with SMA I hope that I encourage others to tell their story and promote change within communities. I also hope that one day treatment becomes available so that my 'just get on with it' becomes a thing of the past.