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 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.

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.

Story by Dimitrios Athanassiou

Hi my name is Dimitris I have two beautiful boys Hermes and Hector with my wife Omaira and we live in Athens, Greece. My older son Hermes has DMD.

What is your dream? My dream is my son’s generation to be the one that in their lifetime we eradicate Duchenne.

What do you like to do? When I find some free time, which isn’t very often, I like to take my family to the beach.

If you could change something in the world, what would you change? I would change the future of the rare diseases.

If you could invite any three people dead or alive to dinner who would that be? the ones that will find the cure for DMD

What was your favorite experience? From going down the Amazon on a boat to riding a bike at 300 kph, nothing was more exciting for me than being present at the births my two children.

What is your best memory? Their first smiles

What is your funniest memory? The expression on the face of my first son when he found out that he is not alone! My typical day starts s at 7am when I wake up and get Hermes ready for nursery before dropping him off. Then it’s straight into my email account where I will exchange messages, build contacts, talk to parent, discuss new information and trials, upcoming medical conferences and parent advocacy. I will take around 30-40 phone calls day from at home and overseas on a typical day for this purpose, then pick up my son around 3.30pm, more emails, more campaigning, stop for dinner, maybe take a final phone call or join a conference call around 10pm, then asleep at 2 or 3 am. If all the above happen I consider it a good day. The next day I do it all over again happily!

What will you do tomorrow? The same as what I will do today, but with a small change because we are driving three hours to jump on a boat and have a this weekend in Cyclades.

Who is your favorite person to have around you? My wife because she beautiful, kind, patient ( with me ) and very smart (says Omi ? )who is checking what I am writing !!!!)

My day is a success when….my family is smiling and we are one step closer to cure DMD

Story by Melissa Brunet

Summer is 6 years old and we live in Australia.We found out Summer is a carrier for Duchenne Muscular Dystrophy when she was 5yrs old. She was very late to sit crawl and walk. She finds it difficult to run and complains a lot of tired legs. I knew there was something different about Summer her whole life, she has had elevated CK levels from 2 yrs old and was finally diagnosed as a carrier of DMD after a full chromosomal microarray was done. I as her mother was tested also am not a carrier.Melissa Brunet

Story by family of Ronan Murphy

Hello, we are the Murphy family. We live in a small village on the north coast of Spain. Ronan is the eldest and has Duchenne, while his younger brother is 12 and is called Aritz. Ronan and Aritz fight all the time but they are also best friends and miss each other when one is not at home.

Ronan hates to write anything, including (especially) his homework for school. He is also sports mad and loves watching all kinds of sports live or on television, but his favourite is football. He follows the Spanish league and his favourite team is Athletic de Bilbao. If Athletic are not playing he likes to support either Barcelona or Manchester. The first thing he does each morning is check the latest football updates on the news. Only the football news is important in Ronans world. He plays hockey at the weekends but they still don’t have enough players to be able to form a proper team and to practice. He would love to take part in a proper competition.

Apart from sports Ronan is also a great cinema fan, but only of recent films, as ‘old’ films from the 1990s or 80’s can be very boring and he never believes anyone when they tell him to watch ‘old’ films. He usually likes them though.

The week of summer camp is one of Ronans favourite times of the year. The national association, ASEM, organises a summer camp in Catalunya where he gets together with other boys of the same age and they can all behave badly together.

Ronan loves to go on holiday and visit new places, but always worries about what the next place is going to be like, if there are going to be accessible bathrooms or restaurants.

He wants to have a chair which can go very fast and which has all the accessories imaginable.

Story by Ángel de Jesús Segundo Tenorio

Soy Ángel de Jesús Segundo Tenorio , tengo 24 años, tengo Distrofia Muscular Duchenne . Tengo 2 hermanos mayores que yo, me gusta la música electrónica , la tecnología , me gusta siempre estar haciendo algo y estar entretenido. Soy diseñador grafico y trabajo en mi casa  realizando trabajo de publicidad y serigrafía . Pienso que a pesar de mi condición hay que luchar por lo que uno desea y anhela .

Story by Ismael, Aron & Fernando

Somos 3 hermanos de izquierda a derecha Ismael,( 16 años)  Aron (11 años) y Fernando  (13 años) . Somos del Distrito Federal. Vamos a una escuela especial. Nos gusta jugar con los coches, y ver peliculas, no nos gusta hablar mucho . Mi mama cocina cochinita  pibil es un guizo yucateco, que a nosotros nos gusta mucho. Mi papa aprendió a dar masajes para darnos la terapia  a nosotros.

Story by Marcos & Daniel Campos García

Mi nombre es Marcos Campos García tengo 9 años de edad, tengo voy en cuarto año de primaria tengo dos hermanos uno se llama Mauricio y el otro Daniel, el cual es mi gemelo que tiene el mismo padecimiento distrofia muscular de duchenne. Me gustaría ser de grande político pero no por ganar dinero u hacer cosas malas si no por lo contrario para ayudar a otras personas en mi situación, físicas o psicológicas ya que no me gustaría que otras pasaran por lo mismo. Algunos días voy a mis terapias en la institución (INR) el cual mi traslado es difícil porque pues es muy largo, tengo que ir en metro a pesar de las personas que ven que soy un pequeño y soy discapacitado la gente no me sede el lugar y en ocasion es me aplastan y me lastiman pero hago el esfuerzo por que quiero cumplir el sueño de ir me dé paseo con toda mi familia a playa del Carmen porque dicen que es bonito.

Mi nombre es Daniel Campos García, se me detecto distrofia muscular de duchenne a los 8 años el cual no sabía que existía y no entendía por qué yo era diferente hasta que me lo explicaron. Todos las noches hago una serie de estiramientos y ejercicios especiales para evitar atrofiar mis músculos, después de mis ejercicio y estiramientos uso mis fedulas para dormir, son un pocoincomodas pero se que es para mi bien así que me aguantó un poco el dolor pues eso me ayuda a caminar mejor, estoy en cuarto año de primaria, en mi escuela se burlan de mi pues no camino bien y no puedo correr a la misma velocidad y caminar igual que los otros niños y niñas pero no me afecta pues sé que no es su intención burlarse pues es algo nuevo y diferente para ellos y no saben cómo reaccionar ante mi situación, a veces mi papa trabaja mucho pero aunque llegue de 9:00pm a 11:00pm me abraza y eso me hace sentir querido y amado por mi familia eso me da fuerzas para continuar con mi sueño de ser filósofo.

Story by Eber de Luque

Hola! Soy Eber de Luque, Córdoba, Argentina y como tengo Duchenne me sumó a la campaña del día mundial del ADM, tengo 25 años y vivo con mis padres también tengo un hermano dr 28 años pero el no vive conmigo por que vive en la capital Córdoba el no padece mi enfermedad pero es mi héroe porque se desvive por mi así como n mis padres! esta enfermedad no me impide ser feliz y hacer todo lo que me proponga por es que en el año 2007 termine el secundario con un título de técnico en contriciones y el año pasado curse maestro mayor de obras en el mismo colegio q egrese recién este año me recibi de maestro mayor de obras!! Lo último que se pierda es la fe y la esperanza!! Por le digo a todo aquel que tenga algún problema ya sea Duchenne o lo que sea que cuando te propones una meta no hay que darce por vencido jamás!! Hay que encomendarse a dios el sabe porque mi dio esta enfermedad que me ha dado muchas satisfacciones tengo muchos amigos, muchas personas que me quieren y me admiran por como soy una persona humilde y luchada!! Me gusta mucho el fútbol soy hincha de Belgrano de Córdoba y también soy hincha del equipo de mi pueblo la Asociación Deportiva y Cultural Luque, me gusta mucho el Cuarteto Cordobes y cuando puedo voy con amigos o mi hermano a los bailes de mi ídolo Cristián Abel Amato el líder del grupo La Fiesta!! Tengo mi propio trabajo me dedicó a grabar música en pendrives o cds y me gusta mucho ser solidario con los demás ayudar a las personas aunque sea con mis palabras lo hago!! Les dejó mi frase que me identifica mucho ” Dios les da las peores batallas, a sus mejores guerreros ” ósea nosotros.

Story by Mónica

¡Hola! Me llamo Mónica y soy la mamá de Eric de 7 añitos que sufre distrofia muscular de Duchenne. Vivimos en Barcelona junto a mi hija Ainoa y mi marido Oscar.

¿Cuál es tu sueño? Mi sueño es conseguir que mi hijo y todos sus amigos Duchenne se curen.

¿Qué te gusta hacer (en el fin de semana)? Me gusta disfrutar de mi familia y mis amigos, solemos ir al cine, al parque, a una terraza o simplemente a pasear. Solemos juntarnos con varios amigos con sus hijos y así disfrutamos los mayores y los peques.

Si pudieras cambiar algo en el mundo, ¿qué cambiarías? Pues me gustaría que no existiera la pobreza infantil, que todos los niños pudieran tener unas condiciones dignas de vida y por supuesto me gustaría que todos los niños con enfermedades raras tuvieran acceso a los medicamentos que se investigan.

¿Cuál fue tu experiencia favorita? Recuerdo mi niñez disfrutando con mis abuelitos con los que pasaba horas jugando y hablando. Me gustaría seguir teniéndolos a mi lado para que me nos apoyaran.

¿Cuál es tu mejor recuerdo? Mi mejor recuerdo son dos: el nacimiento de mi hija y mi hijo. Desde ese momento nada hay más importante en la vida para mí.

Describa su día a día: Después de dejar a mi hijo en el colegio, me voy a trabajar toda la mañana hasta la salida del cole de Eric. Después comienzan las terapias de rehabilitación para mi hijo, fisioterapia, natación, etc… Es una rutina diaria desde hace tres años y a veces dura, pero tengo la suerte de que Eric se adapta muy bien. Es un niño muy simpático y abierto y lleva su enfermedad con mucho optimismo.

¿Qué hiciste ayer? ¿Qué vas a hacer mañana? Ayer fue un día como otro cualquiera, la rutina diaria de trabajo y terapias. Mañana hay que añadirle la revisión de Eric con el neuropediatra.

¿Quién es tu personaje favorito de tener a tu alrededor? No tengo ningún personaje favorito. Me gusta estar con gente que me quiera y me acepte y sobre todo que me apoye en los buenos y malos momentos.

Termina la frase: Mi día seria increíble… si por fin se encontrase un tratamiento para mi hijo que le permitiera tener una vida digna y por supuesto le permitiese seguir con su sonrisa.