Welcome to Mans’ website!

The idea behind this website is to keep family, friends, colleagues and others who are interested updated on Måns, his illness and the situation that we find ourselves in. We also want to make contacts, build up a network, give support and share our experiences with others to whom the unthinkable has happened. This sort of thing could never happen to us, after all…

The website is an attempt to describe Måns, his illness – Duchennes Muscular Dystrophy (DMD) – and the rest of the family, as well as the sadness and joy we experience. Because Duchennes Muscular Dystrophy is an uncommon illness that not many people are familiar with, we also want this website to spread information so that more people become aware of DMD.

Another aim of the website is to lay the groundwork for something that Måns can take over and shape as he wants when he gets older.

The website is for everyone, and we would gladly welcome feedback of any kind

From the start…

It all started when Måns was learning to walk. He was very unsteady on his feet and often fell. With time it got better and we thought nothing much of it. It was when the staff at Måns’ day-care said they thought we ought to have someone look into it that we started to realise that he had a problem with his balance.
Måns was referred to various paediatricians who could see nothing wrong, other than that he was maybe a bit flatfooted. A year later, at the beginning of January 2007, we were referred to a new paediatrician. Måns at this time was three-and-a-half years old. The doctor said that Måns had abnormal movement patterns and therefore wanted to take blood samples. Two weeks later we were asked to come to the children’s clinic to get the results. That night we could not sleep at all, and instead searched in panic on the internet and in reference books for clues as to what it could be. We had read about Duchennes Muscular Dystrophy, but because it was so uncommon, it seemed unlikely.

When we met the doctor and a welfare officer at the hospital we realised that it would be terrible news. The tests showed that Måns in all probability had DMD and that he would have to have a muscle biopsy and further tests the following week. The three days that followed were among the worst we have ever experienced. We couldn’t eat or sleep and the energy just drained from us. All we could do was grieve. We would like to thank our parents who supported us around the clock. As time has gone by, and with the help of a psychologist and a welfare officer, we have been able to handle the grief and even bring out the joy that is still there within us. This support has been unbelievably valuable for us.

A few weeks later we got the test results and it was confirmed that Måns has Duchennes Muscular Dystrophy.

 

 

 

Created June 2007


 

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