31 Days of SMA: Instead of a Horse, I Got a Wheelchair

Photo courtesy of Stéphanie Houvet

Day 3 of 31

This is Stéphanie Houvet’s (@stefookie) story:

My name is Stéphanie and I’m from France. My father is French and my mother comes from the Czech Republic; they met on holidays.

I was born in the Czech Republic with SMA type 3. Before I was diagnosed, I would always tell my parents that I wanted a big, white horse that would carry me everywhere I wanted — as if deep down I knew something was not right, since I would get tired easily. Instead of a horse, I got a wheelchair that gave me back some freedom.

Education was a bit tedious. My parents did their best to make me go to normal schools, as most councils thought it would be better for me to go to special needs schools (not that there is anything wrong with them). I ended up with a bachelor of arts degree in English, Polish, Czech, and cross-cultural studies from the University of Strasbourg.

My family and SMA have taught me to be resilient, fight for my needs, and listen to my body. School was one story, but finding work is a whole other one. Life can be difficult whether or not you are disabled; you just have to do your best.

I am very grateful for the life I have and for my family. As my only carers (at this time), they have done and still do so much to make my life easier. Unfortunately, they do grow older, and I know they won’t be my carers forever. It may be odd to some, to still be at your parents’ home at 30, but sometimes it just is too complicated financially. Getting older is scary, especially since you’re getting more and more dependent; we just have to figure it out step by step (or should I say, one ramp at a time).

On another note, I love to read romance novels and self-help books (we need to take care of our mental health!), play video games, go to the movies, and discover new wheelchair-accessible places, especially restaurants. Oh, and I love makeup. I never cease to be amazed at how it can change a person physically and mentally.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.