Photo Blog by Maria and Hanna Fries

My name is Maria Fries-Lindgren. I was born in Sweden and I also went to school
there. 25 years ago I moved to Switzerland to work and I’m still here. I’m married
with Daniel and we have two lovely children. Mattias, 11 years old who has
Duchenne, and Hanna, 9 years old. I do not have a professional life, I stopped workin
g when my son was born. I like very much being mom and housewife. I also like writ
ing, reading, cooking, gardening and to jog. I do some voluntary service with the website
www.duchenne-schweiz.ch.
I answer mails from families recently diagnosed with duchenne and I try to help and
support 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 I
was 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 sit
together and talk. Suddenly we start laughing, just like that. A glance, and we
explode 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 for
the children. After they are gone to work and school, I go out to jog. After that I do
some 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 at
15.15. 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 aro
und 18.30 we eat. The children go to bed around 20. Then my husband and I sit on the sofa with a cup of
tea and talk a little bit. Some evenings he has to work a little bit on the PC, then I
join 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 duchenne
moms from the german speaking part of Switzerland to meet and exchange
experiences, and to have a great day together, of course. Some of them I met for
the first time. I was overwhelming to learn about so much power and strength and
love! We took a boat trip to a small place where we got off the boat and had a nice
lunch in a beautiful restaurant. We talked and talked. We laughed and we cried. Late
afternoon we went back with the boat, an old steamer, and enjoyed the sun, the
wind 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 of
clothes. 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 eve
ry week with him to France. We take the train (TGV) from Basel. During travelling I wil
l do some work on my laptop, answering e-mails and preparing some documents. If
I get tired I listen to music and close my eyes. When we arrive in Paris I walk with
my 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 sit
in the bed, my son watches TV and we eat a sandwich. During a commercial break he
takes a short shower, during the next one he brushes his teeth. At 22 we switch
of the TV and the light. Holding his sweet little hand we fall asleep. We would both
prefer to be at home in our own beds, but we know how important the clinical study
is 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 favourite
persons to have around me, except my family. I like be being alone, so maybe the
answer is: nobody ?
I’m Hanna Fries, I’m the sister of Mattias. Mattias has Duchenne. I’m 9 years
old. 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 and
clean water. I would like to invite Taylor Swift, my grandfather
and 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 wi
th us to an amusement
park. There she went with a ghost train. I was wait
ing outside. When she came out she laughed so much that she cried and I laughe
d with her. I wake up at 6.30. After I have got dressed, I draw
a 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 star
ts at 8.10. At 9.40 there is a break where I play outside with my friends. School
stops at 11.40. Then I go home and have lunch which my mother cooked. Some da
ys I have school in the afternoon. Then I leave at 13.10 and come back two
hours later. I have homework everyday to do. Sometimes I play with a friend, or go to a dance
lesson. 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 wi
th her. In the afternoon
we took a boat trip on the lake of Lucerne. My moth
er picked me up in the evening and we went home.
Tomorrow I will have to go to school again. I have
no choice!
My favourite person is my best friend Lorena.
My day is a success when… nothing bad happened to me and nobody said
something stupid to me.