My name is Magnus Ahde and I am the grandfather of a little boy diagnosed with Duchenne Muscular Dystrophy.

Background

When my grandson's mother and father received the news of the diagnosis a little over a year ago, it naturally came as a shock to us all. We had understood that something was not quite right but we had no idea that there was even such a thing as Duchennes.
At first we lived as if in a bubble and it was difficult to understand or to accept it.
We have a large family on both parents' sides and we also have good contact, so we got together early on and realized that this is tough but it's something we have to deal with together. Of course, the toughest for parents and later siblings, but we as close family and friends also have a trying time ahead of us.

Strong together, every day

We have decided to try to make every day as good as possible and we will do that for as long as possible. The parents have met with the association for Duchenne Muscular Dystrophy and received support and advice, which has been helpful. There is also a foundation that collects money for research for Duchenne Muscular Dystrophy, so there is a commitment around this diagnosis.
But… I together with my grandson's uncle found that there is a hole…
We talked a lot about wanting to make a difference here and now.
Even if it's not big things, we want to create something that unites and that makes a difference in everyday life.
We decided to start the Duchenne Family Foundation.

together we make a difference

Our idea is that we should help with small and hopefully slightly larger efforts for the people who are affected.
As a small example, our little guy got stickers for the wheel sides of his first wheelchair. We realized that it is not free and we are glad that we have the finances and the opportunity to help with such a thing. Not so big but our little guy is proud of his wheelchair and his tough wheel sides. We would like everyone who gets their first wheelchair to have the same opportunity to pimp their chair. We can help with that.

Small but important contributions

We see lots of other things that are individually not that big but that can hopefully bring some joy and maybe make something hard a little less hard.
Another thing we want to do is to spread knowledge about this relatively unknown diagnosis, partly by working for greater awareness ourselves and partly by making the diagnosis, via our ambassadors, something that is better known to the public. The reason for that is that we want to create an understanding of differences and an understanding that life is not the same for everyone but together we can make it as good as possible.

Become part of the Duchenne Family Foundation

Our hope is that you, the public, will also feel that you can also be a part of helping with this. Maybe through a donation, a large network where we can get information out or maybe you have something that you think could help make a guy (or in very rare cases a girl) happy to have a slightly simpler and happier everyday life.

TOGETHER WE MAKE A DIFFERENCE, join us and do it too!