Måns today 2007

Week 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.

Santa Claus 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.

Week 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.

Speaking of 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.

Week 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!

Week 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!

Week 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.


Week 43 (mid October)
Everyone 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 at DMD Project

Week 39 (late September)
This 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?

Week 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…

Week 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 not alone.

Week 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.

Week 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.

Week 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.

Week 24 (mid-June)
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.