52 (late December)
We spent the weekend in Gothenburg and the Christmas market at Liseberg.
Ebba took good care of Måns on all the rides. Perhaps the
most fun was seeing Måns joy as he drove round by himself
in the bumper cars among all the other children. On Saturday we
all drank Dukoral vaccine again cholera and diarrhoea to get our
stomachs used to it before the upcoming holiday. Måns had
a bad reaction to it which led to vomiting and fever. We thought
at first he had the winter vomiting bug, but as no one else in the
family got it we think it was a side effect on the medicine.
has come at last! The children had obviously been good again this
year as there was a whole load of presents. Aunt Emily is visiting,
so Christmas Day will no doubt be spent with various games and activities.
Overall, everything feels pretty good, and we are looking forward
to our trip to Thailand in January. It will be great to just be
together and take each day as it comes.
50 (mid December)
Måns has finally taken part in Santa Lucia celebrations! Last
year, with his “star boy” outfit, he had to be carried
in by one of the day-care staff because he didn’t want to
either walk or sing. This year he was dressed as Santa Claus, and
knew all the songs by heart! He obviously got a taste for it as
he repeated the performance at home with his big sister. Recent
weeks have been taken up with general Christmas preparations, including
making grandma’s Santas. On two evenings we gathered around
the kitchen table and got professional assistance from our good
friends Linda and Benny. The Santas have been a huge hit. Big thanks
to everyone who has bought them or helped to sell them. But there
will be no more this year; Grandma is tired of them and needs a
rest. But later on we will get going again to build up a big stockpile
for next year.
Santa Claus; who out there believes he exists? Fredrik has certainly
met him. By day he goes by the name Neil Perera, and he is the man
behind Scandic International who is sponsoring our marathon endeavours.
He has offered to change the amount he is giving to Måns’
fund to 15,000 kronor as there are now 15 people who are running
for Måns. He will also be donating 100 kronor for each person
wearing his company t-shirt on marathon day. So, if you happening
to be passing through Stockholm on the day or have relatives there,
get in contact with us and we will sort everyone out with t-shirts!
Just imagine seeing 50 people all with “Måns t-shirts”
on the start line! It is now too late for further entries to the
marathon, as all 18,000 places are taken, but everyone is welcome
to come along and cheer us on.
By the way,
Neil also thought that Måns should get a really big Christmas
present, and therefore made a generous contribution. We have ordered
a super-cool red drum kit which we hope Måns will get a lot
of enjoyment out of.
48 (late November)
On Monday Måns met his physiotherapist and occupational therapist
for some tests. It was the first time the same tests had been carried
out since he started cortisone treatment in August. He had to run
10m, 50m, do various exercises on a floor mat and have angles of
his arms and legs measured. We could see clear improvements in quickness
and flexibility. For instance he could run twice as quickly as before
and could manage the stairs without holding on to the banister!
It is really good to see that the cortisone is helping him and that
the side effects have not been noticeable so far (touch wood). We
have also met an endocrinologist at UMAS in Malmö to discuss
Måns’ needs and the risks with growth hormone treatment.
We were totally in agreement that Måns under current circumstances
does not need treatment as he is keeping within the normal height
curve. All autumn Måns and Fredde (from day-care) have been
going to the warm water pool at the hospital. The whole family was
there to see what progress had been made, and what an experience
it was to see how much fun they were having. Måns, who previously
did not like to get water in his face, was doing big jumps from
the side of the pool, both forwards and backwards. He was more under
the water than above it – totally amazing! Up until now we
have had one waterbaby in the family (Ebba) but now we have two!
46 (mid November)
There is now a whole lot happening on the research front, and on
the SMDF website there is documentation gathered under ”nyheter”
which shows the status of the various projects. It is also great
– and moving – to hear that Asta, Måns’
86-year-old great-grandmother, is keeping herself up-to-date through
our website. A big thank-you to Stina for printing out enlarged
copies that Asta can read!! Måns has been invited to start
treatment with growth hormone. But because there are not yet any
studies showing positive effects of the treatment, and that some
even show that it could be damaging for muscles, we have chosen
to wait and see. On the good-news front, Adidas have decided to
sponsor the runners who are taking part in the Stockholm Marathon
on May 31 to raise money for Måns. They will be providing
us with shoes and shirts. Thanks Adidas for this fantastic contribution!
44 (late October/early November)
It’s been an activity-packed week. Fredrik has been to SMDF’s
committee meeting in Skövde. It was a very rewarding meeting
where I was finally able to put faces to the people we have been
corresponding with. It was great to see the strength and commitment
among the people there. There was a real feeling of optimism for
the future. We planned among other things next year’s symposium
in Jönköping (25-26 April). It will hopefully be a rewarding
weekend with both Swedish and foreign speakers. More information
will be posted on SMDF’s
website. As we wrote last week, a new medicine is going to be tested
on a group of boys in London.
A medicine, PTC124, seems promising and we hope that the results
will be positive. We emailed PTC
and were told that the mutation that Måns has may be treatable
with the medicine. It is still a long way off, but our sense of
hope has grown. Otherwise, Måns has had school holidays and
enjoyed playing and swimming, and a trip to Experimentariet in Copenhagen.
43 (mid October)
is feeling fine. Måns is spending all his time drawing, and
produces about ten pieces per day. Wonder if he’ll be as talented
as his aunt and his sister?! Next week is autumn school holidays
and we’ve got a few fun things planned. There are a lot of
positive things happening right now on the research front. An extensive
project in the UK is going to be getting underway soon. Read more
39 (late September)
week even more people have found their way to our website, both
in Sweden and from elsewhere in Europe. They are parents who have
just got the tragic news about their son, or parents who have lived
with the illness for a longer time. It means a great deal for us
to make these contacts as it makes us stronger to know that we are
not alone. Of course we hope that we can help to make it a bit easier
for everyone. Together we are strong! When it comes to Måns,
he is doing great. He is funnier, perkier and even naughtier than
he was before. We are keeping our fingers crossed that the side
effects remain at a distance. At day-care he has told the other
children that he has an illness in his legs which means that sometimes
he has to ride in a pushchair when the others are walking. They
all just took it in their stride. Otherwise, plans are well under
way for the Stockholm Marathon. Six brave men have put themselves
forward. Could it be even more?
37 (mid September)
A lot has happened since our last post! Last week the REMUS specialist
team was here in Ystad to take a look at Måns. It was quite
hard work to watch nine adults studying our little boy. Måns
took it all in his stride, mucking about and playing with his physiotherapist
as normal. When it comes to the cortisone, Måns is now in
his fifth week – and so far we have not seen any side effects.
We hope it carries on this way. We have noticed that he has become
perkier, for the most part mentally. He has also started swimming
in a warm-water therapy pool. Every Friday Måns is joined
in the 34-degree pool by his favourite day-care teacher Fredde.
The past few weeks have been pretty tough for us. It has been harder
than we thought to get into the normal work routine because our
focus is always somewhere else. It takes the smallest thing to knock
you out of your stride… Something positive out of all this
misery is that I, Petra, am not a carrier of this horrible illness.
Last week I was called by geneticists in Lund who were able to give
me this welcome news. This means that my sister, Emely, does not
need to worry, and neither does our daughter, Ebba.
Because Måns’ day-care will be organising an “exhibition”
to raise money for the fund, we wanted to inform all the other parents
about his illness. Again we were deeply moved that there are people
willing to get so involved. David Wiles, who is Måns’
friend Hannah’s dad, is translating the website into English
and will also be running the Stockholm Marathon to raise money for
the fund. The more that run with him, the greater the contributions
will be to the fund, so if you want to join the team, please get
in contact. I, Fredrik, will start autumn off by training hard because
naturally I will be joining in – even if it means crawling
all the way round…
34 (late August)
Now day-care, school and the daily routine started to fall into
place. It has been a tough week with daily life reminding us what
we are going through, and it feels as if time is just running away.
Måns can still not use his splints for more than a couple
of hours in the evenings, but next week we will cast new ones and
hopefully they will work well. The cortisone treatment has now been
going on for two weeks and we have noticed that Måns has got
perkier and does not need as much sleep as he did before. We have
not noticed any improvement in his mobility but that should come
with time. Måns is so good at taking the cortisone tablets,
vitamin supplements and stomach ulcer medicine and doesn’t
complain at all. We have also been at Malmö University Hospital
where Måns had a skeletal X-ray. He also handled this like
a pro and thought that the machine that moved over his body was
like a robot… It is immensely gladdening to see how some people
are getting involved in raising money for Måns’ fund
and for Stiftelsen för Muskel Dystrofi Forskning (the Foundation
for Muscular Dystrophy Research). His day-care is going to arrange
an open house to sell things that the children will be making during
autumn; Jonas has recorded an album of songs (read more under Songs
for Life) and grandma has made 30 gnomes which will be on sale.
It is also gratifying to see that other families in our situation
have found this website. It gives us strength to know that we are
32 (early August)
The summer holidays are starting to come to an end… After
a warming holiday where we drove to Italy, this week has been filled
with sun, bathing, a visit to the dentist (the tooth is probably
dead) and doing tests. Because we will start with the cortisone
treatment this week there is a need for a base so that we can see
how Måns is developing. For Petra and me it is tough to have
reached this point but we have also realised that we have no choice
in the matter. We have started the stretching exercises but Måns
is finding it a bit hard to relax. We hope that we get the exercises
sorted when we get into the normal day-care routine next week. On
Friday we will recast the splints because they don’t fit and
so haven’t been able to be used all summer.
28 (mid July)
What an unlucky week! Last weekend Måns fell on the laundry
room floor and the blood just came pouring out of his mouth. The
next day the dentist confirmed that he had four loose teeth and
possibly a fractured jaw as he had a high fever. Måns was
given penicillin but did not get better. The fever didn’t
let up, and just got worse and worse. Some nights he was running
nearly 41 degrees and lay and babbled in his sleep. Another visit
to another dentist revealed that he had a serious form of herpes
in his mouth. He was taken off the penicillin and Måns was
left to sweat it out with a high fever for few more days. But now
he is on the mend, and today he has been as happy as he always is.
Of course we get extra worried when he gets sick as he already has
his illness and you just don’t really know how it affects
his general health.
27 (beginning of July)
This has been a pretty intensive and tough week. We have decided
that Måns will start with cortisone treatment in August. This
was a hard decision to take because there are many serious side
effects. We have also been referred to an endocrinologist to discuss
the effects of growth hormones. It is hard to say if they are a
good thing or not. Måns has received his splints and has accepted
them without any complaining and slept with them for a whole night.
It’s probably because he thinks they are cool with their cars,
aeroplanes and helicopters. Some adjustments will be needed as they
cause some redness on his feet. Otherwise things are moving forwards.
Måns is enjoying having summer holidays, and today Hannah
from day-care was here playing.
Today Måns is not much different to his friends of the same
age. He plays and gets up to mischief just like any other four-year-old.
The difference is that Måns gets tired legs more quickly and
often just wants to sit and take it easy with his toys or books.
It seems as if his body knows its limits and tells him when it’s
time to take it easy.
Måns’s hips are stiffer than those of other boys his
age and it is hard for him to walk up stairs or climb up on the
slide. But it doesn’t trouble him because his friends at day-care
unconsciously help him in all situations. It’s wonderful to
see them cooperating!
He often wants to be carried or to go in the pushchair and he tells
us when it’s time.