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My name is Tina.
I am 23 years old and live with a condition called Spinal Muscular Atrophy (SMA) Type 2. It’s a genetic disability that causes the muscles to waste away slowly.
There are three types of SMA. Type 1 is very severe. You are already weak when you are born and you don’t survive very long. Type 2 (which is what I live with) means you are born with good muscles but as you get older, your muscles waste away but at a slower pace. Type 3 means you’re able bodied when you are born, but when you reach adulthood your muscles get weak.
SMA does not affect a person’s mind. People with SMA are very intelligent. We find ways to adapt to life. I started driving an electric wheelchair at 2 years old and it’s my main form of mobility – it is basically my legs.
SMA affects people’s respiratory function so I have weak lungs and I use an oxygen machine at night. I have to leave it on all night so this is why I get marks around my nose. I also have a cough machine which pushes air into my lungs and sucks so it’s a coughing mechanism. I do this twice a day and this machine has saved my life many times because I don’t have the strength to cough anything that may stick to my lungs and cause me to choke.
Growing up I have adapted to my condition and I always find creative ways to do things. For example, using a fork to scratch an itch on my face or using my long straw to push something closer to me. It’s something you wouldn’t see a regular person do, but for me it’s a solution.
The muscles in my neck are weak. I must be in a sitting position to hold my head up, however if I am in a lying position my head will flop.
My arms need to be in a specific spot on my tray in order for me to use them. My right arm needs to be in towards me and I will ask many times throughout the day to move my arm where I need it to be. Directing people on what I want is how I live my life. I cannot move or do anything myself. I am very dependent on the people assisting me to move every aspect of my body.
The only thing I can do is talk and have a positive attitude which helps to give me confidence throughout the day.
I have always been very shy to speak to people. scosa is helping me have the confidence to talk by assisting me to get out in the community and make new friends. At scosa, I really enjoy the cooking program because I can learn how to shop for the ingredients, prepare the food and stir it in the pan. Craft is also another favourite activity of mine, especially drawing and painting. It is another way for me to express how I feel.
The most challenging thing for me is the loss of my mobility. If I could wish for one thing this Christmas, it wouldn’t be for new clothes or material things, it would be to have the ability to get around – to go wherever I want and whenever I want, without relying on anyone. I hope that one day they can make cars that let people drive around whilst sitting in their wheelchair. Imagine the places I could go!
Regardless of our ability, we all have hopes and dreams. This Christmas, please make a donation to scosa so they can continue helping people like me to access a wide range of programs and activities. scosa gives me fun things to do during the day and helps me to gain the confidence I need to talk to people and keep me active. That is what’s most important to me this Christmas.
Thank you & Happy Christmas!
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