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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

John BikesicHi! My name is John Ivan Bikesic, and I am a 34 year old living with a neurological condition called Spinal Muscular Atrophy type 2. I was diagnosed with this condition at around 10 months of age after my parents noticed that I was a bit different than other babies my age. I was described as a “floppy” baby, and had little to no reflexes when I was examined by the doctors. A blood test confirmed the doctor’s suspicions that I had SMA, although this wasn’t to be able to be accurately confirmed until much later in my life when I had a Genetics test done at the request of my Neurologist. This test confirmed abnormalities of the SMN genes consistent with SMA2.

As I got older my parents noticed that I wasn’t walking properly and would prefer to crawl around instead. As a result I spent most of my toddler years being pushed around in a stroller. However, even from a young age they noticed I was very determined and would walk around wherever I could by holding onto furniture, or even pushing a chair around. Despite my obvious disability my parents wanted me to have a normal life as much as possible, so I went to a normal school like anyone else. This is when I got my first manual wheelchair aged around 6 or 7.

Unfortunately, as I got older the manual wheelchair wasn’t suitable for me as I was losing strength in my arms to push the wheelchair myself. At around the same time I also stopped walking completely and would become totally reliant on an electric wheelchair for mobility. Even though I knew I was getting weaker I became used to being in the wheelchair, and kept being determined not to let it stop me doing the things I wanted to do. During school I would often get teased for being different and not being able to participate in some activities but again I didn’t let it bother me. I made a lot of good friends throughout my years at school and continued to show my determination to have a normal childhood.

I finished school at 16 completing year 11 and decided to continue my passion of computers. I studied web page design and pursued a career in IT. I started a government traineeship and continued to study IT and web page design at TAFE SA. After the traineeship I was fortunate to be offered a full time position working for the SA Government’s Building Management division where I was maintaining their website and various other business systems. I continued to work for the same department for 15 years and have many fond memories of my time in the work force.

Unfortunately, around 2014 my condition deteriorated to the point where I could no longer move my arms, therefore needing assistance with everything (feeding, brushing teeth etc). Because of this I had to make the difficult decision to cease employment as it was just getting to difficult to travel to work and perform my duties. I live at home with my mum who is my primary carer and assists me with most tasks but I also require support from carers to help with dressing, showering etc.

In 2017 my condition unfortunately deteriorated further and I ended up in hospital with pneumonia. I also had respiratory failure as a result of this and had to have an emergency tracheostomy inserted. The next few months were the most difficult time of my life. I was unable to talk, or eat and almost ended up in a care facility as my mum was not able to provide the 24 hour care I now required. However, I was determined not to let this happen and just wanted to go back home. Thanks to the help of my family I wrote a letter to the government and managed to get my care funded to go home with the assistance of nurses.

Due to my sheer determination I continued to get better and eventually fulfilled my goal of having the tracheostomy removed to the amazement of all the nurses/doctors as I was told I would never get better.

It was during my time in hospital that I heard about this amazing drug called Spinraza which was helping people with SMA. I am hoping that this drug will become available for everyone and even though I know it is not a cure, if it means I can get just a bit of my independence back by doing simple everyday tasks like feeding myself, or even just being able to shake someone’s hand, it would mean so much to me. My ultimate goal would be able to resume work again and make my contribution to society.