My name is Maria Fries-Lindgren. I was born in Sweden and I also went to schoolthere. 25 years ago I moved to Switzerland to work and I’m still here. I’m marriedwith Daniel and we have two lovely children. Mattias, 11 years old who hasDuchenne, and Hanna, 9 years old. I do not have a professional life, I stopped working when my son was born. I like very much being mom and housewife. I also like writing, reading, cooking, gardening and to jog. I do some voluntary service with the answer mails from families recently diagnosed with duchenne and I try to help andsupport them. I was recently elected as a board member in the Swiss muscle society(Schweizerische Muskelgesellschaft).

My dream, my biggest dream, is that a cure for Duchenne soon will be found.During the weekends I like to do something with my family. Bicycling, walking,playing games…If I could change something in the world, I would end all wars.I would like to invite the pope, Wladimir Putin and my grandmother, who died when Iwas only one year old. My favourite experience is the birth of our two children.My funniest memory is when I meet my mother (once or twice a year) and we sittogether and talk. Suddenly we start laughing, just like that. A glance, and weexplode in a warm hearted laugh, without a reason. It happens every time we meet.I wake up at 6. Then I get up, make lunch for my husband and prepare breakfast forthe children. After they are gone to work and school, I go out to jog. After that I dosome washing and cleaning. Some days I have to do some office job, answering e-mails or preparing some papers. At 11 I cook lunch for the children. We eat at 12.They go to school again at 13.15. Mostly I work a little bit again. Kids are back at15.15. I help them with their homeworks. My son likes to bake, cakes and bread,and we often do that together. I prepare dinner and when my husband comes home around 18.30 we eat. The children go to bed around 20. Then my husband and I sit on the sofa with a cup oftea and talk a little bit. Some evenings he has to work a little bit on the PC, then Ijoin him on my PC. Or I read a book. I go to bed around 23.

Yesterday I met 10 great duchennemoms! I had organized and invited duchennemoms from the german speaking part of Switzerland to meet and exchangeexperiences, and to have a great day together, of course. Some of them I met forthe first time. I was overwhelming to learn about so much power and strength andlove! We took a boat trip to a small place where we got off the boat and had a nicelunch in a beautiful restaurant. We talked and talked. We laughed and we cried. Lateafternoon we went back with the boat, an old steamer, and enjoyed the sun, thewind and the beautiful sight of the mountains. It was a wonderful day!Tomorrow I will go for a jog first thing in the morning. Then I will iron a load ofclothes. I will have to pack a small suitcase also.Since two years now, my son takes part in a clinical trial in Paris and we travel every week with him to France. We take the train (TGV) from Basel. During travelling I will do some work on my laptop, answering e-mails and preparing some documents. IfI get tired I listen to music and close my eyes. When we arrive in Paris I walk withmy son in the wheelchair to the hotel, it’s a 15 minutes walk along the river Seine. After our arrival in the hotel we have a procedure, it’s always the same… We both sitin the bed, my son watches TV and we eat a sandwich. During a commercial break hetakes a short shower, during the next one he brushes his teeth. At 22 we switchof the TV and the light. Holding his sweet little hand we fall asleep. We would bothprefer to be at home in our own beds, but we know how important the clinical studyis and as he never complains about it, I neither do I so.My favourite person to have around me is… I don’t know.

I don’t have any favouritepersons to have around me, except my family. I like be being alone, so maybe theanswer is: nobody ?I’m Hanna Fries, I’m the sister of Mattias. Mattias has Duchenne. I’m 9 yearsold. I live in Switzerland. I would like to be a popstar.I like to draw, play with barbies and Legofriends.I also like to play outside. And of course I love to sing and to dance.Everything should be for free! And that everybody in the world has fresh andclean water. I would like to invite Taylor Swift, my grandfatherand my best friend Lorena.My favourite experience was to learn to dance.My best memory is from a camp together with other kids.My funniest memory is when my little cousin went with us to an amusementpark. There she went with a ghost train. I was waiting outside. When she came out she laughed so much that she cried and I laughed with her. I wake up at 6.30. After I have got dressed, I drawa little. Then I have breakfast.

I go to the toilet and brush my teeth.At 7.50 I go to school with my brother. School starts at 8.10. At 9.40 there is a break where I play outside with my friends. Schoolstops at 11.40. Then I go home and have lunch which my mother cooked. Some days I have school in the afternoon. Then I leave at 13.10 and come back twohours later. I have homework everyday to do. Sometimes I play with a friend, or go to a dancelesson. I have dinner at 18.30, then I brush my teeth. I go to bed at 20.30.Yesterday I went to my grandmother and had lunch with her. In the afternoonwe took a boat trip on the lake of Lucerne. My mother picked me up in the evening and we went home.Tomorrow I will have to go to school again. I haveno choice!My favourite person is my best friend Lorena.My day is a success when… nothing bad happened to me and nobody saidsomething stupid to me.