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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

Stacey TylerMy Name is Stacey Tyler, I am a 43 year old female living with spinal muscular atrophy type 3.

I was diagnosed when I was 3 years old. I reached all the normal mile stones as a baby, however as I started walking my mum noticed that I was walking on my tip toes and was constantly tripping over. SMA was not easy to diagnose 40 years ago as the doctors really didn’t know a lot about this condition back then.

We lived in a small country town with no specialist care so I would travel with my family to Brisbane to see my neurologist. I still remember to this day the muscle biopsies and extensive tests that I needed to definitively diagnose SMA 3. The doctors told my mum to take me home and hope for the best. She was told I would probable not survive.

Well I did survive thanks to my family and the advice of my long standing neurologist who told my family not to wrap me in cotton wool and to let me try anything I felt I could do. I went on to do pretty much everything every other child did however I couldn’t really run and it took me longer to learn how to ride a bike. I grew up not really feeling to different from everyone else until I noticed people looking and staring at me when I was walking. I did have some difficult times however I was determined not to let this define me.

I left school at 14 and went to work in our family business as a Beauty Therapist. I was struggling, however I kept pushing not wanting to admit that I was getting weaker and that this disease might take control. I became very good at masking the symptoms and my true feelings, always putting it down to hurting my back or kicking my toe. I never discussed or admitted to anyone that I had a neuromuscular disease, as I was embarrassed and worried people would not accept me. I did everything that everyone thought I couldn’t do including leaning to drive a car, travelling, working and dating as I was adamant that I was going to be what I perceived as normal.

When I was 22 I fell pregnant with my fist daughter and when I was 30 I had my second daughter. I kept working the whole time even going back to work 4 weeks after each baby. I do regret not being able to spend more time at home with my babies, however I guess this was all part of me trying to be super mum and not a mum with a disease. Once again, it was all about what everyone else thought and me not showing my weakness.

Things where starting to become really difficult now as I even had to ask my daughter to help with things like carrying her baby sister into child care and helping to bath her. All of a sudden I realised I needed a lot more help with day to day things like grocery shopping and house cleaning. I could no longer vacuum or mop my own house.

It was hard physically and emotionally, not being able to go to school and sporting events for my children as I could no longer walk very far. I was so proud and still hiding the severity of my disease never wanting to use a wheelchair so hence missing out on a lot.

Eventually, about six years ago, I gave in and got my first wheelchair. I cried for weeks as I felt weak and felt this disease had finally won! I have come to terms with the fact that I am using a wheelchair now, however as days go on I become weaker each day.

Becoming weaker made me realise that I may no longer be able to work as a beauty therapist. Being a single mother I knew it was not an option for me not to work. I studied and re-educated myself so I could look at options in regards to working whilst sitting. I have now made the transition to office work. I am very unsteady on my feet now and only walk when at home. I use my wheelchair every day at work.

Each day becomes harder as I become weaker leaving me more reliant on others to care for me. I can no longer live independently however I do my best. I hope I will be able to keep working however I am not sure how long SMA will allow this to happen.

I am still hopeful that one day I may be able to beat SMA and I am desperate for some sort of treatment to help me do this.