I have SMA type 3 (spinal muscular atrophy), this is a rare hereditary muscle disease. SMA type 3 can be stable for years. There is no clearly noticeable worsening of the symptoms. Decline often seems to occur after long periods of inactivity. SMA is not curable at the moment, but there is a medicine in attendance (spinraza).
I am very aware of my illness, but don’t like to concern myself with it. I am not looking forward to how my life can turn out because SMA is a progressive disease. To view it one day at a time that is what i try. I am very positive in life and am an enterprising person. For example i like to go out with my friends, go on vacations, just started to live on my own, and I have a nice job.
I do not let myself be stopped by the fact that I am in a wheelchair. there are so many beautiful things i experienced. For example, I have skated with my friends, dived, in amusement parks I was lifted out of my chair and I went over everywhere. I try to get as much out of life as possible.
it notice that I get a lot of positive reactions from people that I have such a positive lifestyle and that they admire me very much and have a lot of respect for me. I also try to radiate this. It is often thought about people who are in a wheelchair that they have a mental illness and that nothing is possible. It just depends on what type of illness you have.
I moved out 6 months ago with care on demand, this means that if I want something I can press a button and then someone comes for help. Now that I live on my own I have even more contact with my friends and I can do wherever I want. This was always possible but it is different, you do not have to take into account.
I met Samira through school, she came as a new girl to my class. At first I thought “what is this?” “I had never seen anyone in a wheelchair before, so I was so surprised. It sounds very mean but I hoped she would not hang out with me. Until I got to know her better they was a connection right away. Since than I often came to her home to do homework, we were always together until the graduation ceremony. After this period we had less time for each other. I went to live in The Hague for one year. The idea for me to leave for a certain period was intense, in this period the contact between us was a bit dilute. Because I was super busy. As soon as I came back we were immediately super close again and our bond became even closer.
After I returned from the Hague, Samira opened up about me taking care of her. Samira did not want to bother me at first, but I wanted to experience what it is like to take care of someone. At first I did not mind doing it, as when we went out I brought her to bed so her parents did not have to. The first time
we went on holiday together I found out that it is difficult to take care of someone for two weeks. I have gained a lot of respect for her parents and people who do this work every day. I knew that I did not have take care of Samira when I was with her, but unconsciously I would take over many things. At one time it became too much and I realized that this was not necessary so I stepped back.
Two friends one wheelchair
We have known each other for 7 years now. We see each other as sisters and we can no longer live without each other. Two months before we went on our second vacation we decided to vlog and we started an Instagram account. We wanted to show people what it is like to have people with a disability and that people can have a wheelchair. We want to continue this in the future.
Curious about the YouTube channel, take a look at twofriendsonewheelchair