My Breath My Music

The Foundation was originally set up for people with neuro-muscular diseases, but has since expanded its horizons and now people with other disabilities are very welcome. My Breath My Music has developed the Magic Flute, featured in the video above.

How it started

Hello! My name is Ruud van der Wel. Some 5 years ago I started to make music with handicapped children, mostly suffering from muscular diseases such as Spinal Muscular Atrophy, Duchenne and Muscular Dystrophy. There is also a smaller target group of those who suffer from Tumors, Leukomalacia, Autosomal Dominant Cerebellar Atrophy (ADCA). I have been a musician since the age of 7 and I'm very aware of the many ways in which playing a musical instrument can benefit anyone, able bodied or otherwise. I'd like to share with you my experiences of playing a wind instrument with this group of children. br>

Developments

In the first place my goal was to find an enjoyable way of giving breathing exercises. As you can imagine, using a wind instrument is a very nice way to achieve this. But, as I found out over the years, there is much more to it if the best possible results are to be achieved. I made some simple adjustments on an electronic instrument, the Yamaha WX5 midi wind controller, and found that this enabled my group of children to play tunes. A full scale of notes (G, A, B, C, D, E, Fis, G) can be played with just one hand and I found that even the most disabled members of the group could play the instrument. The WX5's powerful technology provides Maximum Sound with Minimum Effort!

I want to introduce 3 of my students:

Sylvia

Hallo. My name is Sylvia Smit and I am 31 years of age. I was born with Spinal Muscular Atrophy (type2), a type of motor neuron disease and have been in a electric wheelchair from a young age. A year and a half ago I moved in with my boyfriend into a 'Focus' home ( assisted accommodation). Until then I was living with my parents. After finishing high school I worked as a receptionist/ telephone operator for nearly 10 years. When I moved I also resigned from my job and now I am looking for work. At the moment I am doing some voluntary work. Six months ago I happened upon the website of a special school, Mytylschool De Brug. I read a piece on breathing exercises with electronic wind instruments. I liked the idea. I used to do breathing exercises and found them boring. No fun instruments, just breathe-in, breathe-out. Because I like music and I was looking for a hobby I contacted Ruud van der Wel. Since last autumn I have been having lessons on the WX 5 every week. I play the instrument with one hand. The keys are very light to touch, so despite my muscle weakness I have no trouble playing. I gained a great hobby and it is good exercise for my lungs too!

Avram

Hallo. My name is Avram and I am 17 years of age. I have Duchenne's Muscular Dystrophy. Recently I had an operation on my back. They put a metal rod in my back to keep me growing upright and to prevent my lungs from getting squashed. I was diagnosed when I was 6 years old. Even before then my parents thought something was wrong. They had read the symptoms in a book. At that stage I could still walk, a few years later I got a wheelchair. First a manual one and then an electric wheelchair. From the age of 12 I have been going to a special school. I am in high school. When I was in 2nd year I got Breathing Exercises from Ruud. I enjoyed it straight away. I was still able to play with both hands then. After a year I was given an instrument on loan so I could play at home also. Initially I wasn't playing all that much, but recently I have been playing a lot more. After talking to Ruud I have decided to change to playing one- handed. This is going very well, thanks to my 'focal'. A 'focal' is an electronically adjustable armrest. Eating, computer work, writing, it is all much easier with a focal. I enjoy learning new songs. There are not many things left I can do, but this is one thing I can do.

Evelien

My name is Evelien and I am 18 years of age. Until I was 7, I was healthy and went to a regular school. Then I became ill. It started with nausea, I couldn't eat in the mornings and I often had hiccups. I also had frequent headaches. Then they found out that I had a brain tumor and also a haemangioma in my right cheek. Since then I have had a lot of operations. The most extensive operation was 8 years ago, on the brain stem. The tumor in the brain stem turned out to be a haemangioma also. Due to this operation I can't swallow and I am fed through a tube in my stomach. My cough reflex is gone as well and I am not able to cough up my mucus. Because of this I have a tracheostomy and am on a ventilator during the night. During the day time I use an electric wheelchair. I have reduced sensation in my hands and feet because of a polyneuropathy. Through school I started therapy to improve my breathing. That is where I met Ruud van der Wel. I enjoyed playing the electric wind instrument a lot but my fingers kept slipping and were in the wrong place all the time. Then we discovered that if I look in a mirror I do manage to press the right tones. Because I have the least sensation in my left hand I only play with my right hand. This way I can't play all the tones but there are enough songs left to play. When I play a tune Ruud accompanies me on the guitar, good fun!

If you visit our site, you can see photographs of our instruments and stands, hear us playing our music and learn about the special notation system Ruud has developed to make it very easy to learn new pieces.

You will find us at www.mybreathmymusic.com