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…
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.
of the website is to lay the groundwork for something that Måns
can take over and shape as he wants when he gets older.
is for everyone, and we would gladly welcome feedback of any kind
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.