I will never forget the first time I wrote a song about my life with Usher syndrome. A year ago, I started writing a song about Usher syndrome to gain more awareness and acknowledgement to the mass audience.
Together with my Visio music teacher, Jorien Habing, I wrote the song and I achieved more than I expected. I wanted to let the people hear and see what it’s like to have Usher syndrome.
With the song *Welcome into this little world* I tried to highlight the fun and also the less fun aspects of life with Usher syndrome. A lot of people think that everything has been solved when having the right glasses, hearing aids, a fine sleep cycle and by the use of other devices.
Unfortunately it doesn’t work out that way. Such a thing is difficult to explain in words. My song with a video clip, made by Joep Rijk, by the way is a song with explanation; it offers more than I can bring over in a thousand words blog. It has been my intention to let people dive into my world to sense what is like to live with Usher syndrome. Therefore my song is called *Welcome into this little world*
Now, about a year later, I can say a lot of misunderstandings about life with Usher syndrome have disappeared. I really can’t just solve my issues with good glasses, a hearing aid or another device. Now people understand more about the impact of my impairments and there were also people who offered their excuses for their behavior in the past. I have reached my personal aim with this song, now just more money for scientific research on Usher syndrome!
#stopUSH and make our dream come true!