Story by Rafael Lugo Vizcaino

Me llamo Rafael, tengo 21 años y vivo en Sevilla. Comenzaría por decir de que, a pesar de las grandes dificultades y limitaciones que supone convivir con la Distrofia Muscular de Duchenne, nunca he tenido ningún tipo de complejos, yo siempre me he considerado una persona completamente normal al contrario, mi enfermedad me da más fuerza para superarme cada día y ser mejor persona. Las dificultades físicas nunca nos deben de impedir ser feliz y conseguir todo lo que nos propongamos, porque verdaderamente los limites están donde tú quieras ponerlos. 

Gracias a ese tesón y afán que siempre intento conservar estoy cumpliendo uno de mis mayores sueños, estudiar en la Universidad para llegar a ser Periodista, de hecho ya tan solo me quedan varias asignaturas para terminar mis estudios. Pero por mucha voluntad que yo le ponga para alcanzar mis metas, sin mi madre nada de esto hubiera sido posible. Porque gracias a ella puedo decir que estoy y voy a la universidad, que puedo llegar a cumplir mi sueño de ser periodista. Ella me lleva a la Universidad, asiste a clase conmigo, toma apuntes…. Mi madre alegra mis días, salgo y me divierto con ella, además de mi madre es una gran amiga. Soy muy afortunado de tenerla como madre. No hay límites en la vida para agradecerle todo lo que hace por mí. Sin ella, no podría ir a la universidad ni sería la persona que actualmente soy. 

Uno de los motivos que me ha llevado a estudiar Periodismo es mi sueño de querer ser periodista deportivo, ya que mi gran pasión es el deporte y seguir al equipo de mis amores el Real Betis Balompié. Cada vez que el Betis juega en su estadio mis primos vienen a recogerme a casa para ir juntos, a ver y animar a nuestro equipo. Yo siempre voy ataviado de mi camiseta del Betis, la bufanda y la bandera, todo lo necesario para alentar a mi equipo a que gane el partido. Todos estos momentos, tanto antes, como durante y después del partido, son únicos y maravillosos. 

Lo que ha día de hoy es un gran aliciente para mí es poder participar en un programa de radio que un grupo de béticos han creado, en la que informamos y debatimos sobre la actualidad del Real Betis Balompié. Además también retransmitimos los partidos de nuestro equipo.

También personalmente me encanta escribir artículos y reportajes sobre los deportes adaptados, para demostrar al resto de las personas el valor que tienen los deportes para personas con discapacidad. Estas disciplinas deportivas desconocidas para muchos son un lujo poder verlas y que se conozcan porque muestran realmente los verdaderos valores del deporte. Muchos trabajos de la universidad los he dedicado a los deportes adaptados porque lo que pretendo es mostrar que las personas con algún tipo de discapacidad, ya sea grave o leve, podemos practicar deporte y llegar a donde queramos. 

Pero realmente lo que más me llena como persona es poder ayudar a la Asociación Duchenne Parent Project de todas las maneras y formas posibles, ya que la labor que están realizando para que los proyectos de investigación sigan adelante es fundamental para que en un futuro no muy lejano, se consiga encontrar una cura para la enfermedad y que nadie más tenga que volver a pasar por las dificultades que esta conlleva. 

Por último me gustaría deciros a todos los que tengáis que lidiar contra la Distrofia, que por muchos obstáculos que nos imponga la vida debemos de armarnos de valor y superarlos como sea. Siempre tenemos que seguir adelante, y luchar con uñas y dientes por nuestros sueños e ir directo a por ellos. Porque son nuestros sueños, nuestras metas y objetivos los que mantienen encendida la llama de la vida. 

My name is Rafael, I am 21 years old and I live in Seville, Spain. I would start by saying that, despite the great difficulties and constraints of living with Duchenne muscular dystrophy, I have never had any complexes, I have always considered myself a completely normal person. My illness gives me more strength to overcome myself every day and to become a better person. The physical difficulties should never prevent us from being happy and get whatever we propose ourselves, because the limits are truly where you want them to be. 

Thanks to the determination and desire that I am always trying to keep, I am fulfilling one of my biggest dreams; studying at the university to become a journalist. In fact there are only a few more courses left to finish my studies. But next to all the efforts I am putting into achieving my goals, none of this would have been possible without my mother. Thanks to her I can say that I am going to university, and I can fulfill my dream of becoming a journalist. She goes with me to university, attends classes with me, takes notes … My mother makes my days happy, I go out and I have fun with her, and my mother is also a great friend. I’m very lucky to have her as my mother. There are no limits in life to thank her all for all she does for me. Without her, I could not go to university and I would not be the person I am today. 

One of the reasons I have chosen to study journalism is to follow my dream of being a sports journalist, as my great passion is sport and to follow the team Real Betis Balompié. Whenever the Betis are playing in their stadium my cousins pick me up at home to watch and support our team together. I always wear my Betis shirt, scarf and flag; all I need to support my team to win the game. All the moments before, during and after the game are unique and wonderful. 

I am so happy to participate in a radio program that a group of diabetics have created, which informs and debates about Real Betis Balompié. We also retransmit the matches of our team. 

Personally I love writing articles and reports on adapted sports, to prove to other people the value of sports to people with disabilities. Many projects I have done for the university are about adapted sports, because what I want is to show is that people with disabilities, whether serious or mild, can play sports and get where we want to get. 

But what really gives me fulfillment is being able to help the Duchenne Parent Projects in all possible ways, as the research projects are critical to move forward in order to find in the near future, a cure for the disease, so that no one else has to go through the difficulties which this entails. 

Finally I would like to say to all of you who are dealing with DMD, which imposes many obstacles in our lives, we must be courageous and overcome whatever is needed. We always have to keep going, and to fight hard for our dreams and to follow them. Because it’s our dreams, goals and objectives that keep the flame of life burning. 

Story by Ernesto Baltazar

Mi nombre es Ernesto Baltazar. Tengo distrofia muscular Duchenne, soy un joven mexicano de 27 años con muchos sueños y ganas de vivir como tú. Escribí un libro, me gusta escribir poesía, especialmente a la vida y al amor.

Si pudiera cambiar algo en el mundo, más bien, qué no cambiaría. Yo no cambiaría la ignorancia, porque es la mejor virtud de los sabios, pues aquel que todo lo sabe ha perdido la oportunidad de aprender y un mundo mejor sería donde todos seamos iguales y no hagamos diferencias, ya que la Tierra se hizo para todo ser vivo y hay que salir a ser felices y a cumplir con nuestra misión, que es vivir.

Mi recuerdo más chistoso fue una vez que me enfermé y me tuvieron en observación. Yo recibí una llamada y bromeaba con que tenía 8 de dilatación, los enfermeros se morían de risa. Es uno de los recuerdos más chistosos que tengo.

Story by Wafic Zein

إسمي وفيق زين عمري ١٤ سنة، أعيش في لبنان أستخدم الكرسي المدولب منذ ٥ سنوات. أشكر الله لإنه منحني أماً رائعة وأب حنون. لدي أحلام كثيرة، أجملها أن أصبح مالك شركة سيارات، وأدعو الرب أن يساعدني لأحقق حلمي،لكن الرب يعلم ما هو الأفضل لي، هذا إيماني وهذا أنا. أحبكم جميعاً


My name is Wafic Zein and I am from Beirut, Lebanon. I’m 14 years old, I have been using the wheelchair since 7 years. I have a great mum and a tender dad. I have many dreams, one of them is to be a car dealer. I pray to God to help me reach my dream, but sure he knows what is best for me. That is my believe and that is me; love you all.

Story by Pedro de Moraes Martinez

Sou Pedro de Moraes Martinez, 27 anos, jornalista, escritor e compositor. Moro em Campo Grande, Mato Grosso do Sul, Brasil. Fui diagnosticado aos 5 anos de idade. Apesar das dificuldades e obstáculos, vivo a vida intensamente. Gosto de esportes, filmes e música. Uso meus talentos para dar sentido a vida e coleciono momentos junto a minha família e meus amigos. Acredito que devemos lutar por nossa qualidade de vida e não desistir nunca de esperar a tão sonhada cura.


I am Pedro de Moraes Martinez , 27, journalist , writer and composer . I live in Campo Grande, Mato Grosso do Sul , Brazil . I was diagnosed at 5 years old. Despite the difficulties and obstacles, live life to the full. I like sports , movies and music . I use my talents to make sense of life and collect moments with my family and my friends. I believe we must fight for our quality of life and never give up waiting the long awaited cure.

Story by Leighton Ward

Hi my name is Leighton I’m 5 years olds , I’m from Liverpool UK, I have duchenne muscular dystrophy, I like to live my life to full and try anything once although I get tired easily sometimes. I love playing with my toys and on my iPad and going on family days out with my mummy, daddy and two sisters.. Hopefully one day soon there will be cure so I can carry on doing everything I enjoy in life..

Story by Philippe Ferreyrolles

Bonjour, je m’appelle Philippe Ferreyrolles, j’ai 19 ans. Je suis atteint de la myopathie de Duchenne de Boulogne. J’ai deux frères âgés de 14 et 16 ans et je vis à Monaco. J’ai suivi un parcours scolaire tout à fait traditionnel, fréquentant les mêmes écoles que les autres jeunes. J’ai obtenu un baccalauréat de compta-gestion en 2014, avec mention. Puis j’ai entamé une première année de BTS, toujours dans la même voie. Mais la matière ne correspondait plus à mes attentes… Cette année j’opte pour les cours par correspondance dans une discipline nouvelle pour moi : la psychologie.

Hormis les études, j’ai plusieurs passions : les sports en général, la musique, le septième art, les jeux vidéo et les animaux. Je possède d’ailleurs deux magnifiques chats, des Maine Coon. Avec une mère néerlandaise, j’ai eu la chance d’aller plusieurs fois aux Pays-Bas et aussi en Allemagne. Je parle donc couramment le néerlandais et l’allemand. Mon père est monégasque. Avec ma famille, nous possédons une maison en Floride, à Naples plus exactement et nous nous y rendons chaque été. Je suis à l’aise avec l’anglais, que je pratique régulièrement. Pour m’aider au quotidien, je bénéficie de trois aides-soignants, spécialement détachés de l’hôpital. Ils travaillent en alternance afin de m’assister.

Comment je vis ma maladie ? Il est important à mes yeux de dire que je connais ma pathologie et ses conséquences. Cela ne me fait pas peur. J’arrive à faire des projets, à rire, à aller de l’avant. Je suis positif et rien ne pourra bousculer mes croyances ! J’ai la chance d’avoir une famille aimante et disponible, la chance de compter sur une équipe paramédicale impliquée et appliquée, la chance de voyager et de fréquenter des personnes toujours attentionnées.  La prise importante et récurrente de médicaments divers et variés est une contrainte mais je fais avec. J’avance, dans mon fauteuil électrique et je ne suis pas prêt de m’arrêter… Cette maladie est un poison mais je ne regrette pas tout. Elle m’a permis de mieux observer et comprendre le monde qui m’entoure. J’ai développé d’autres capacités. Je suis heureux comme je suis, c’est l’essentiel!

Hello! My name is Philippe Ferreyrolles and I’m 19 years old. I suffer from Duchenne Muscular Dystrophy. I’ll tell you something about me! We are a family of 5. My parents Ursula & Franck, me and my two brothers, Anthony (16) & Florian (14) and I can’t forget our beautiful cats Pastis & Chat-Lif, 2 wonderful Main coons! We live in Monaco but we also like to travel. I followed a traditional high school, frequenting the same classes as my fellow students. I graduated in 2014 and then did one year of accounting. This year I’ve changed my mind…. I want to try a more psychological road!

Also I have several passions in my life… like sport, music, cinema, video-games and animals. My mom is from the Netherlands and of course I go there visiting my family. Germany, I like very much as well.. so I speak Dutch and German. My father was born and raised in Monaco. My family owns a beautiful family house in Naples, Florida. We go there every summer, even if it’s very warm at that period.. We just love it!

In my everyday life, I’m helped by three nursing auxiliary. We have a lot of fun together and I feel very comfortable with them. I have my own apartment across from my parent’s apartment. This was such a great opportunity… This way I’m completely independent but still close to my family. We always share meals together but I can still have my own life.

How do I feel about my illness? Well, it’s important to say that I know it perfectly and I am well aware about the consequences. I’m ok with that. I have no fear. I make plans, I laugh every day, I go ahead with whatever I want to do but most important. I stay positive. Nothing can ever make me change! I am very fortunate to have a great family and I am proud of who I am.

Living with DMD is not easy every day and sometimes even hard but I’m not afraid. I carry on, on my modern electric wheelchair and nothing can stop me. This disease is poison but I don’t regret all of it. I am better in observing and understanding people around me. I developed other capacities. I am happy and that is the most important thing!

If you want to follow me on FB: Philippe Ferreyrolles. It would great seeing you there!

Story by Felix Kuhwald

Hi my name is Felix and I’m 4 years old. I live in Manchester, UK with my mummy, daddy and 3 brothers, Oscar, Casper and my twin Herbie. I am starting big school in September. I love cars and motorbikes so much and always carry them around in my pocket! I also love superheroes and dressing up. My favourite game is to play hide and seek with my brothers. I like to hide behind the chair in the lounge (this is where I also hide with chocolate I have sneaked from the fridge!) When I grow up I’d like to be batman and save the day!!

Story by Damien Birambeau

Damien Birambeau, créateur de jaccede.com, et entrepreneur militant

“Un jour un professeur m’a dit que ce n’était pas parce que j’allais mourir jeune qu’il ne fallait pas travailler.”

A 43 ans, Damien Birambeau peut témoigner qu’une échéance n’est pas forcément fatale et qu’une personne atteinte de la myopathie de Duchenne peut se réaliser professionnellement, à une condition : celle de se révolter, de se battre et de ne pas avoir peur de saisir toutes les opportunités qui se présentent, quitte à les provoquer. Pour Damien, ce combat a abouti une première fois en 1994 par la création de sa propre entreprise.

“J’étais convaincu que l’imagination pouvait m’aider et que la technologie ferait le reste.”

Travail, imagination, technologies, mais aussi un nouveau cadre législatif qui arrive en France en 2005 avec la loi pour l’égalité des droits et des chances, la participation et la citoyenneté des personnes handicapées.

A l’image de Damien, les conséquences de cette loi changent durablement une partie du quotidien des personnes en situation de handicap, notamment pour tout ce qui concerne les aides humaines. Vivre mieux et plus longtemps devient un peu plus une réalité.

“Pour la première fois, mes besoins ont vraiment été pris en compte. (…) Aujourd’hui j’ai quatre assistants de vie en emploi direct qui se relaient jour et nuit tout au long de la semaine. Je suis beaucoup plus autonome, je peux sortir, faire des projets… mon quotidien s’est énormément amélioré.

Et parmi les projets de Damien rendus possibles par les conséquences de cette loi de 2005, il y en un en particulier, celui qui lui tenait le plus à coeur, et dont l’objectif est paradoxalement de lutter contre les manquements et retards de la même loi : l’accessibilité des lieux publics.

Ainsi le site www.jaccede.com créé par Damien milite pour l’accessibilité universelle et réalise un guide collaboratif des lieux publics accessibles aux personnes à mobilité réduite.

Par ces réalisations, Damien fait partie des pionniers qui ont su retourner la violence que leur imposait le destin en une énergie créative ouverte sur le monde, et qui peuvent, grâce à une bonne prise en charge médicale et sociale, se donner (arracher?) le temps nécessaire à leur ambition.

“J’ai le sentiment que ma vie n’est pas banale. Je n’y vois pas de limite (…).”


Damien Birambeau, founder of jaccede.com and militant entrepreneur

“One teacher told me a long time ago: it’s not because you’re going to die young that you shouldn’t work hard.”

Damien Birambeau, aged 43, is living proof that fate can be defeated and that a person living with Duchenne muscular dystrophy can reach professional fulfilment if they refuse their lot, fight it, seize every opportunity that comes their way, even if that means creating those opportunities yourself. Damien won the first round when he managed to set up his own company in 1994.

“I was convinced that imagination was all it took and that technology could help provide the necessary tools.”

Imagination, hard work, technology, but also a new disability legal framework, with the passing of France’s equal opportunities act in 2005.

The implementation of the 2005 Act changed the lives of people with disabilities, enabling them primarily to have access to personal care-givers and to longer, better-quality lives.

“For the first time in my life, my needs were truly taken into account (…). I now have four personal carers on a direct employment contract basis, 24/7. I live more independently; I can go out, make projects… everyday life has become so much easier.”

Amongst Damien’s projects which were made possible after 2005, there was one particular, pet project: ironically enough, his aim was to overcome one legal shortcoming, i.e inadequate accessibility in public places in France. Hence the creation of www.jaccede.com by Damien, a collaborative website where accessible venues are listed and universal design and access are promoted. His achievements have turned Damien into one of a few pioneers who have transformed a fateful and brutal diagnosis into creative energy and openness. Thanks to improved social and medical care, and their own relentless efforts, they now have more time to fulfil their ambitions.

“I feel that my life is no ordinary life. The sky’s the limit (…)”.

Story by Naren Radhakrishnan

Coimbatore, India

Being confined to house for long and then a sudden gala trip of going out makes me pep up, going out in the wheel chair, going out of house is really joyful. Well, going out does not happen everyday. Nevertheless, daily evening I sit outside my house and watch children play and people moving around. Whoever passes through my house, halts for a moment to greet me and say hello to me. Once a week, I go out for a few hours’ tip for shopping, temple, park, picnic spot ,…….and much more.

Once in two months, I visit my native place to see my beloved grandparents. Trips of 3 to 5 days to places like the beach and other tourist places are the happiest moments of my life. I cherish the mighty nature and the glimpses of that bring so much joy into my heart. I wish everybody could experience it. Lots of warm wishes and prayers to all my fellow DMD ians so that they have several happy moments in their lives.

Story by Lucas, Davi & Samuel

Estes são Lucas (9 anos), Davi (6 anos) e Samuel (3 anos). Vivemos a vida intensamente, mesmo diante das dificuldades que a DMD nos proporciona. Temos esperança de dias melhores para nossos filhos e para tantas outras famílias que lutam com a DMD. Não é fácil! Lutamos todos os dias, mas sem perder a fé, a esperança e a alegria de viver!


These are Lucas (9 years old), Davi (6 years old) and Samuel (3 years old). We live life intensely, despite the difficulties that the DMD provides us. We hope for better days for our children and for so many other families struggling with DMD. It’s not easy! We fight every day, but without losing the faith, hope and the joy of living!