“At first they said she was just lazy. But my daughter, Stephanie, is not like other kids.”

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Last year we taught our daughter to drive. She was a little hesitant at first as she had relied on others up until that point to get around.

We took her to the nearby university on a weekend to drive around in the deserted outer carparks and get her bearings in the vehicle. It takes a bit of practice to understand how responsive the controls are, how tight a turning circle you can take and get a feel for acceleration and deceleration. We wanted to make sure that she could do all those things without worrying about running into things such as cars, pedestrians or other objects.

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She looked comfortable, although at times had a little trouble turning left. She seemed surprised initially that she could make the vehicle go herself. She is naturally cautious by nature, but doesn’t get stressed out. She nuts things out until she masters them, but for driving, she needed a little extra encouragement.

Spinal Muscular Atrophy (SMA)
Stephanie and her family. Image supplied.

We encouraged and supported her. We knew that this was a crucial time in her life and her ability to drive would not only enable her to gain her much-needed independence, but also lay the foundations for her life ahead, enabling her to make friends, explore the world around her and increase her learning opportunities. It was difficult to make her see that as she had no experience at that time of the things she may miss out on, opportunities other kids her age took for granted because they had always had them.

LISTEN: Sue Channon talks about what it is like to be a parent of a very sick child and what people can do to make life a little bit better. Post continues after audio.

Stephanie, though, is not like other kids. She’s two years old and has Spinal Muscular Atrophy (SMA) Type II, an infantile form. She cannot walk or stand unassisted. She can only sit unsupported for short periods of time and has poor head control. But she is bright and bubbly, very friendly and has an admirable determination to deal with all the challenges that life has put in her way.

When we talk about 'driving', we're talking about her wheelchair - the one thing that allows her to move independently. She has limited strength, and even pressing buttons on a remote, or steering her wheelchair can require a great amount of effort. If she falls over, she is unable to sit up by herself.

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spinal muscular atrophy
Stephanie's diagnoses of SMA affected her whole family. Image supplied.

Looks were important as, at her age, the vehicle you drive looks can make a massive difference to how you are perceived by your peers. Something bright, zippy and compact looks fun and friendly and encourages people to come and have a look, while a large dark grey tank can tell people to stay away for fear of getting run over.

Prior to Stephanie’s diagnosis, we had never heard of SMA, let alone known what to look for. She had always been a bit floppy, not wanting to take weight on her legs and had trouble lifting heavy objects above shoulder height. She had always hated tummy time and lost the ability to roll over completely by about 15 months of age. At 12 months, we were told she was lazy. At 18 months, we were told she had a permanent disability and would be in a wheelchair and never be able to stand up on her own. In a moment, life’s goal posts shifted and the world as we knew it changed.

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