SMA Australia


Phone: (03) 9796 5744

Julie AddisonMy name is Julie Addison, I am 38 years of age and I suffer from SMA Type 2.

I am the youngest of 5 children and grew up in a small country town called Malmsbury in Victoria. I was diagnosed with SMA at the age of 14 months, the specialist told my parents the best thing for them to do, was say their goodbyes to me, and walk away never to return, as I would not live past my 3rd Birthday. My parents with their determination decided against the specialist advice. After my 3rd birthday, the specialist apologised to my parents and told them he was wrong in his advice, I had proved to him there was hope still left for SMA sufferers, and that he admired their strength and willingness to never give up hope.

Although I have had many scares in my life with my health, most of them being pneumonia, I managed to succeed and excel in many milestones. I went to a “normal” Kindergarten and Primary School, which my parents had to fight for me to attend. I was granted a full-time Integration Aide, who assisted in all my needs at school.

In Grade 5, my scoliosis had curved to the point that I required surgery. Although the chances of survival weren’t great, my parents decided to give me a chance in life. If I didn’t have the surgery, I was guaranteed to die due to my lungs being crushed from my spine, I was sick with chest infections all the time, it was a no-win situation. I survived the surgery and had a metal rod inserted on the bottom half of my spine. Later, a second surgery was completed to insert rods right up to my neck.

My next achievement was High School, I completed VCE, and although I had many health issues, I kept fighting. I had many illnesses including reflux that required major surgery. Next, I completed my Advanced Diploma of Business Accounting. During my time at TAFE I met a man, at the age of 21, my partner Brad, proposed to me, we were engaged!

Again, I required spinal surgery to remove part of my rods as they were causing a lot of pain and were no longer connected to my spine. All went well with this surgery, and I had no complications. I was still living with my parents, and Brad had moved in with us. Soon after our engagement, Brad was diagnosed with Thyroid cancer, and within 2 weeks he had surgery. Brad recovered from his surgery and was given the all clear with his cancer.

Although I knew it would be a challenge, I decided to start to look for employment. I was offered a part time Office Managerial position at a Disability Employment Agency, which I accepted. In 2007 Brad and I started building our own home, this was an exciting time, as I was going to be independent. After 3 months of employment, I was notified that I was no longer required, I took them to Unfair Dismissal and I won, I was awarded damages, but I was unemployed.

Brad worked full-time with very long hours, so I was granted care for 4 hours a day except for Sunday. I decided to try and gain employment again but I was unsuccessful day after day, there was always a reason or an excuse.

In 2009 I started suffering severe daily migraines. These were debilitating and no doctor was able to give me any answers or explanations, but life still went on. From 2011 onwards, Brad and I have had many children in our care. We are not foster parents, we just love to help children when their parents are in need. We’ve had many challenges with this, and although I am disabled, I was still managed to support and assist these children. I would help them with their daily activities. Life was busy, but it was good!

Over time, I was getting more and more migraines. Life was tough. I had the challenge of sometimes needing to go to bed when I had no carer or partner home. This was impossible to cope with and the pressure it put on my partner was tremendous. He was having to come home from work on a regular basis to care for me. He started to suffer from Mental Health issue and was advised to leave work for a while.

I suddenly developed a condition called “Photosensitive Epilepsy”, which is where I have a seizure if I am exposed to flickering lights. I am still trying to find answers regarding my migraines and explanations to epilepsy, but life still goes on. I try to make the most of what I have, and yeah sometimes it gets me down, but I always have a moto I live by, “there is always someone worse off than yourself”.

Written by Julie Addison