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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

Katrina RoseKatrina’s Story

My name is Katrina, I'm 23, I have Spinal Muscular Atrophy type 2 and I live in Devonport Tasmania. I have one older brother named Jacob. When I was 2 we moved in with our grandmother, grandfather and Aunty. I went to mainstream school, completed year 12, continued my education by attending TasTafe and completing units in Business Administration, Community Services and Accounting.

I was never supposed to walk and my family was told I would die before my 10th birthday but I was very determined. I kept trying to walk just like everyone else around me and when I was 4 my determination paid off. I didn’t want to use my wheelchair so when I was tired I would use my walking frame throughout the day I would lose my balance but I would use the wall or a piece of furniture to pull myself up. I continued fighting the odds throughout my childhood and now once I sent my mind to something I don’t give up until I’ve achieve my goal.

I really enjoyed school, I had friends and attended birthday parties, I participated in all my classes and school activities. I learned to swim and I achieved my goal in reaching 400m, I was one of the best swimmers in my class, I could tread water, dive to collect items from the bottom of the swimming pool. I would get in the water alone but always had my grandmother and teacher aide on the side of the pool just incase anything went wrong.

I was about 9 when I started getting really tired, I would spend most of my days in my electric wheelchair. I started falling behind in my school work and couldn’t keep up with my peers, life started to get a bit lonely. in grade 6 I put myself forward to be one of the student councils and I was very happy when I was elected. I went to L.A for a Make a Wish trip to meet Mickey and Minnie Mouse at Disneyland when I was 6 and I also got to experience swimming with dolphins at the age of 10.

I’m only speaking from my own experience but once my disability deteriorated, the school focused on my physical disability rather than my education. In High School I was given primary school work, my school assumed I had a learning disability because I was a bit slower and there were certain things I didn’t understand but I wasn’t given the correct education and missing days because of medical reasons.

I had funding for a teacher aide but my funding was used for other students that didn’t get as much funding, I didn’t let that stop me from obtaining the skills to find employment in an area that interested me and I do want to work towards becoming an advocate to assist other people to speak up and have their voice heard to make sure their rights are protected.

I’m currently studying MYOB and I’m really enjoying it. I’m hoping to complete community services certificate III in 2019. I’m also working on an autobiography about living with Spinal Muscular Atrophy and I would like to get it published within a few years. I’m hoping my experience will help new families that have just been diagnosed and help people understand the life of someone who is in a wheelchair.

I found love with an amazing guy that I met online, we have now been together for almost 3 years and have been living together for 2 and half years. It hasn’t always been easy but no relationship is, having my partner by my side makes it all worth the hard time because we have had plenty of good moments in life and plenty more to come. He makes me smile even on  the hard days, I love his honesty and he is trustworthy. He understands me in a way nobody has before. I love how he helps me not just with day to day things but emotionally and gives me confidence in life. Last year I asked him to marry me, I brought him a ring and got it engraved, then I painted some rocks and wrote on them asking the question. I sat them in the garden with 15 reasons why I love him and pegged them to a string before he got to the rocks and he said yes.

I have done so much in my life but finding love and moving out of home have been some of the best things that has happened to me. What would Spinraza mean to me? When I first heard about Spinraza I was so excited I got on the phone and told my grandmother the news. When you’re old enough to understand what’s going on and that you will get worse, suddenly you don’t know how to deal with the disease. My muscles are slowly being destroyed and it's scary not knowing how fast this disease will progress.

My arms feel like they are weighted down everyday, it makes it hard to do simple tasks like eat, brush my hair, apply my makeup or even scratch my head. I have dreams to own a house, get married, have children and have a career in advocacy. I keep up to date with other people who are receiving Spinraza and the impact it has on their life. I don’t know if I’ll get some movement back but even if it just stops or slows down the progress, any movement and strength I currently have won’t be taken away so that I can achieve my goals and have a fulfilling life.

Katrina Rose