worldduchenne Duchenne Stories

Story by Florencia Schwab

Mi nombre es Florencia Schwab, tengo 8 años y vivo en Coronel Suárez, Provincia de Buenos Aires, Argentina. Estoy cursando 3º grado del siclo básico, me gusta ir a la escuela y compartir cosas con mis compañeros de la escuela. Yo tengo distrofia muscular desde nacimiento, tengo mi papá y mi tia que también tienen distrofia muscular; camino por mis propios medios aunque tengo dificultades para correr, subir escaleras, se me caigo me cuesta levantarme y demás cosas, pero trato de hacer una vida lo mas normal posible. Cuento un día mio como es: me levanto a las 7 Hs a desayunar y a las 8 Hs ingreso a la escuela, salgo a las 12 Hs, me pasan a buscar mis papas y vamos a casa a almorzar, después hago los deberes si tengo y en cada día de la semana por la tarde tengo diferentes actividades; los lunes paso la tarde con mis abuelos y tengo kinesiología, los martes voy a inglés y natación, los miércoles tengo terapia física y kinesiología, los jueves inglés y natación y los viernes terapia física. Los fines de semana me gusta dormir, invitar alguna amiga a jugar y jugar con mi tablet. Me gusta ayudarle a cocinar a mi mamá y a mi abuela. Me gustan mucho los animales, especialmente los perros. Me gusta ir de vacaciones y poder estar en la pileta lo mas que puedo, me gusta salir a pasear de noche y comer pizza o panchitos. Me gustaría poder viajar a Disney.

My name is Florencia Schwab, I am eight years old and I live in Coronel Suarez, Buenos Aires, Argentina. I’m in 3rd grade, I like going to school and to share things with my classmates. I have muscular dystrophy since I was born, my dad and my aunt also have muscular dystrophy; I can walk on my own, but I have difficulties running, climbing stairs, I fall and it is hard for me to get up and other things, but I try to make life as normal as possible. I will tell how my day looks like: I get up at 7am for breakfast and I go to school at 8am, I leave at 12pm, my parents pick me op and we go home for lunch, then do homework and each day during the week in the afternoon I have a different activity; Mondays in the afternoon I stay with my grandparents and I have physical therapy and kinesiology, Tuesdays I have English and swimming classes, on Wednesdays have physical therapy and kinesiology, on Thursdays English and swimming classes and Fridays swimming and physical therapy. On weekends I like to sleep, invite a friend to play and to play with my tablet. I like to help my mother and grandmother cooking. I love animals, especially dogs. I like going on vacation and to be in the pool as much as I can, I like to go for a walk at night and eat pizza or panchitos. I would love to go to Disney.

worldduchenne Duchenne Stories, News

Story by Andrew Sedmihradsky

Starting on Father’s Day this year, my four year old son Max and I set off on a 600 km cargo bicycle ride from Ottawa to Hamilton along the Trans Canada Trail – a journey we named ‘Max’s Big Ride’. Max and I made this ride to advance awareness about Duchenne muscular dystrophy and also to raise money for research. So far the ride has raised close to $55,000.

Max’s Big Ride was a true family affair as Max’s grandparents and mother also hit the road with us in support roles. It was a tremendous adventure and we saw lots of wildlife along our scenic route and met even greater numbers of kind and incredible people. Max and our family were welcomed warmly by cheering crowds at various points along the way and we were all deeply touched and incredibly thankful for all the support we received.

I am happy to report we made it to the finish line, arriving in Hamilton’s Bayfront Park on Canada Day, July 1st, to the cheers of our friends and supporters. While Max’s diagnosis has been very hard for our family to deal with, we have decided to roll up our sleeves and fight this horrible disease as best we can. This year’s ride is just the beginning, and planning for our 2016 fundraiser will begin in a few weeks.

worldduchenne Duchenne Stories

Story by Luis Armando Antuna Valiente

Hola! Mi nombre es Luis Armando Antuna Valiente, he cumplido 14 años, tengo 5 gatos una tortuga y dos pájaros. Terminé el segundo de secundaria, tengo distrofia muscular Duchenne, me gusta jugar Xbox en linea. Mi juego favorito es Grand Theft Auto V. Vivo con mis padres en México.Les quiero decir a todos los niños que tienen Duchenne que sean felices y le echen muchas ganas, espero que muy pronto exista un medicamento en México y en todos los lugares del mundo que nos alivie, cure y haga que caminemos y vivamos más felices todos los niños que luchamos a diario con esta enfermedad al igual que sus familias.

Hi! My name is Luis Armando Antuna Valiente, I turned 14 years, I have 5 cats, a turtle and two birds, I finished second grade, I have Duchenne muscular dystrophy. I like to play games on the Xbox online. My favourite game is grand theft auto V. I live with my parents in Mexico. I would like to say to all boys with Duchenne that I wish them to be happy and enjoy life, I hope that very soon a drug will be available in Mexico and the rest of the world that will relieve, cure and make us walk so that we, and our families, all can live happier lifes.

worldduchenne Duchenne Stories, News

Story by Maria & Hanna Fries

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 websitewww.duchenne-schweiz.ch.I 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.

worldduchenne Duchenne Stories

Story by Sébastien Roch

Hello, my name is Sebastian, I am 32 years old. I live in a small village in the French Alps, near the Swiss border. Grace has a cable car near my home, I can admire a magnificent panorama and Lake Leman. I was born in Indonesia and have been adopted.
I love nature and animals, since childhood I was surrounded by cats dogs, they give me the strength to live without them I would not want to fight . Nature and animals are my strengh. I have a great interest in Eastern cultures, Buddhism. I’m a fan of astronomy and I make beautiful videos and photo montages. I love computers. After obtaining a diploma of general culture, I could not continue higher studies because I have been harassed by teachers. Apart from my mother, nobody, no association helped me.
But I fight against the disease, I want to live.

worldduchenne Duchenne Stories

Story by Alexandru Daniel Croitoru

Urcă orice munte, treci peste orice pârâu, / Curcubeul îl urmează, până ce visul tău se realizează

Numele meu este Alexandru Daniel Croitoru am 9 ani si sunt din Bucuresti, Romania. Sunt un copil cu multe visuri frumoase şi îndrăzneţe dar nu imposibil de realizat. Imi place sa ma joc sa cant sa dansez sa calatoresc si sa mă bucur de orice clipă a copilăriei . Am invatat că un vis poate prinde aripi dacă există voinţă, iubire, muncă si credinţă. În visele mele sunt , un înger cu baghetă fermecată care îndeplineşte tuturor dorinţele frumoase. Acestea sunt versurile mele preferate dintr-o poezie pe care am învățat-o la şcoală la ora de engleză care ma motiveaza si imi dau incredere.

„Climb every mountain, pass every stream, / Follow the rainbow, till you find your dream.”„Urcă orice munte, treci peste orice pârâu, / Curcubeul îl urmează, până ce visul tău se realizează.”

Sunt un copil ambitios , energic şi nu-mi poate lua nimeni dreptul la a visa la un univers al meu special, plin de bunătate, iubire si frumuseţe. Daca as avea puterea de a schimba ceva in lume as crea o lume minunata a copiilor cu mult soare si mii de jucarii pentru toti copii, o lume a povestilor. Zilele din timpul saptamanii pentru mine arata ca o cursa contra timp deoarece ne place sa dormim si atunci ne trezim la limita si incercam sa nu uitam sa ne spalam pe dinti, sa mancam, sa ne imbracam, sa luam ghiozdanul, temele si sa mergem in graba catre scoala. Seara la cina as invita parintii deoarece clipele frumoase petrecute alaturi de cei dragi, sunt cele mai frumoase intr-o familie. Diminetile din weekend sunt cele mai frumoase deoarece lucrurile se fac intr-un ritm normal si fiecare lucru se face cu placere si la timpul lui. Mami pregateste micul dejun iar apoi sunt liber sa ma joc pe calculator sau pe X-box jocurile preferate . Tot in weekend am in program sa merg impreuna cu tatal meu la piscina sa innot iar apoi in parc , la film sau in vizita la bunici si la verisoarele mele. Parintii mei sunt cele mai importante persoane din viata mea. Cea mai frumoasa amintire a mea a fost legata de vizita la parcul de distractii Lego Land din Germania de anul trecut . A fost cel mai frumos cadou al parintilor pentru mine .

My name is Alexandru Daniel Croitoru. I am 9 years old and I live in Bucharest, Romania. 

I am like any other child on this earth, with lots of beautiful and sometimes daring dreams, but none of them impossible to accomplish. I like very much playing, dancing, travelling and, in general, I enjoy any moment of my childhood. I have learned that a dream can become true if there is enough will, love, work, and belief. In my dreams I am like an angel with a magic wand which fulfills everyone’s most beautiful wishes. These are my favourite rhymes from a poem I’ve learned at my English classes in school. It motivates me a lot and fills me with huge trust:

“Climb every mountain, pass every stream, / Follow the rainbow, till you find your dream.”

I am an ambitious kid filled with energy and nobody can steal my right to dream of my special universe, full of good deeds, love and beauty. Had I have the power to change something in this world, I would create a sunny and marvelous children’s world filled with thousands of toys for all kids, a sort of fairy tales’ world. The usual week days are kind of a race against time. We like oversleeping a little and when we finally decide to jump out of our beds we struggle to brush our teeth, eat, get dressed, prepare the school backpack, put my homework inside, and race to school. In the evening, at dinner time, I would invite my parents since there is nothing better than the time spent with our loved ones in the middle of the family. Of course, the weekend mornings are the best, because things are no more a race, we take our time, everything is done at a normal pace and with pleasure. The rush is gone! Mummy prepares the breakfast, then I am free to enjoy my preferred games that I play on the computer or on the X-box. My parents are indeed the most important persons in my life. My best memory is the visit I made last year at the Legoland Park in Germany. It was the most beautiful present my parents gave me.