Story by Benjamin James

I am about to start a new chapter in my life along with so many other 18 year olds who have finished their secondary school days. 

This new chapter in my life is university, a Chance for a fresh start, new friendships and endless opportunities. Having the opportunity to go to university is a gift that should not be taken for granted. It was a pleasant surprise to find out that despite not quite getting the grades on results day, that I had secured a place at the university of Nottingham to study Neuroscience. This was clearly meant to be. I have feelings of excitement and apprehension as a new adventure lies ahead, with new challenges and a chance to shape my future and discover my true potential. University is a great place to grow as a person and to discover who you are and what you stand for; it is a chance to take risks and to stand out as an individual, to speak out, have your voice heard and ask questions of the world and of yourself. For me there are massive changes in my life other than starting university, such as having and using a powered wheelchair for the first time in my life and all the challenges and frustrations that it presents, as my condition, DMD has deteriorated over the past two years. However this new powered chair will enable me to do all the things that any other 18 year old would expect to do. The chair will enable me to move forward in my life without DMD holding me back. It will allow me to make the most of the opportunities that university presents. I am so thankful to all those who have supported me and have helped raise the money to be able to afford the powered chair, which will enable me to live life to the best of my ability. 

There is so much more to think about and organise before I go off to university, such as making sure my room is fully adapted to my needs as well as making sure I have a care package in place that meets my needs. This makes things just a little more complicated. But all these things will ensure that I can do all the things that I want to do, to be able to make the most of university life. Going to university is a massive change, moving away from home, making decisions on your own and facing the world. Without doubt there will be highs and lows, but at the end of it all, undoubtedly you will change and develop as a person, hopefully for the better. 

I have faith that it will all work out and this will be the start of an amazing journey. Having Duchenne should not be seen as something to hold me back and although it is not easy to get others to understand the implications of Duchenne and the true severity of the condition, it will not prevent me from living life. University should be the best three years of your life and you should not let Duchenne or any other condition bring you down. There will be days when your condition does bring you down, but you will get through those days and keep on keeping on. Having Duchenne should not prevent you from doing all the things in life you wish to do. 

“For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be strong in character and ready for anything”. James 1:3-4 

Story by Rafael Guimarães Lourensetti

Oi, meu nome é Rafael Guimarães Lourensetti tenho 8 anos e sou brasileiro. Meu diagnostico foi no mesmo mês em que completaria meus 6 anos de idade. Tenho um irmão, o Guilherme com 4 anos e moramos com o papai e a mamãe.

Sou um menino alegre, um pouco tímido, que AMA os animais e a natureza, sou curioso, muito ativo, adoro brincar, viajar, conversar, pesquisar, ir à praia e estar com outras crianças. Levo uma vida normal como qualquer menino da minha idade, apenas com alguns cuidados extras que não me impedem de fazer nada. Atualmente curso o 3o. ano do Ensino Fundamental.

Ainda sou pequeno, mas acredito que pela minha paixão, estou inclinado a ser um futuro veterinário ou algo que eu possa estar perto dos animais.

Amo viver, estar ao lado de pessoas especiais, de aprender e vivenciar novas experiências.

Motivos tenho muitos, pra continuar a ser feliz. Que assim seja!


Hi, my name is Rafael Guimarães Lourensetti have 8 years and I am Brazilian. My diagnosis was the same month that would complete my 6 years of age. I have a brother, Guilherme with 4 years and live with mom and dad.  I’m a happy boy, a little shy, who loves animals and nature, I’m curious, very active, I love playing, travel, chat, search, go to the beach and be with other children. Lead a normal life like any boy my age, only with some extra care that does not prevent me from doing anything. Currently the 3rd course. year of elementary school.  I’m still small, but I believe that by my passion, I’m inclined to be a future vet or something I can be close to the animals.  Love live, stand next to people, to learn and share new experiences.  I have many reasons, to continue to be happy. So be it!

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 Yoann Le Lamer

Yoann Le Lamer – l’excellence malgré la maladie

Yoann Le Lamer est en fauteuil depuis ses sept ans, mais sa maladie n’a jamais été un obstacle dans son cursus scolaire. Bachelier avec une moyenne de 19/20, admis aussitôt en classes préparatoires de Maths Sup, Yoann a aujourd’hui 19 ans et intègre ces jours-ci son année de Maths spé, avec comme objectif une école d’ingénieur à Toulouse dans l’aéronautique, sa grande passion. Cette réussite le jeune homme sait le devoir à toutes les aides qui lui ont permis de suivre une scolarité dans un cursus normal, au milieu des autres enfants et adolescents de son âge, là où il a pu assouvir sa curiosité intellectuelle et sa soif de connaissances.  Mais il connaît aussi  l’implication de sa famille dans son combat contre la maladie, ainsi qu’en témoigne son père, Pierre : “ Il n’y a pas de choix face à la maladie et à son évolution mais je ne veux pas baisser les bras. Il ne faut pas la laisser gagner… C’est un peu marche ou crève. Et aussi un combat, une bagarre au quotidien pour rendre la vie de Yoann meilleure ».

Tout entier tourné vers son rêve de grands espaces, Yoann a aussi passé son brevet d’initiation aéronautique et a déjà sauté en parachute pour son baptême de l’air. « Nous voulons qu’il puisse aller au bout de ce qu’il veut faire, qu’il vive sa vie ; si cela pose des problèmes, nous nous adapterons ».


Yoann Le Lamer – pursuing excellence despite the challenges of disease

Yoann Le Lamer lost ambulation at the age of 7 and though he has been using a wheelchair since then, his condition has never been an impediment to his educational achievements. He passed the baccalauréat (French end of secondary education diploma) with flying colours and an overall grade of 19 out of 20, was admitted into a much-sought-after scientific preparatory course last year and is now gearing up to start the second and last year into the course, which will lead up to his entering a prestigious aeronautical engineering school in Toulouse. Yoann is passionate about aerospace. He knows how much of his educational achievement he owes to the care and support that enabled him to go to mainstream schools, in the midst of children and teenagers of his age, where he could fully develop his curiosity and thirst for knowledge. He is also grateful for the involvement of his family in his battle against disease. “We have no choice, in the face of the progression of disease, other than battling it. I refuse to give up,” says his father, Pierre. “We must defeat it… It is indeed a case of sink or swim. It is a constant fight, a daily struggle to make Yoann’s life better.”

As he still yearns to conquer wide, open spaces, Yoann has passed a flying initiation certificate and has already taken a maiden parachute jump. “We want him to take things as far as he likes, to live his life to the fullest; if obstacles arise, we’ll adjust”, Pierre adds.

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 Ralph Franken

Mijn droom is voetbalverslaggever worden

Voetbal is mijn favoriete hobby en grote passie. Na mijn HAVO-examen volgend jaar wil ik journalistiek of communicatie gaan studeren en me gaan specialiseren in voetbalverslaggeving. Een voetbaltijdschrift heeft al eens een wedstrijdverslag van mij geplaatst, dus mijn debuut als freelance journalist heb ik al gemaakt. Het hebben van Duchenne heeft zo zijn voordelen: ik kan makkelijker mijn idolen ontmoeten, zoals hier Robin van Persie op Old Trafford in Manchester!


My dream is to become a soccer journalist. Soccer is my favourite hobby and my biggest passion. Next year, after my graduation from high school, I want to get my Bachelor in Journalism or Communication, thereby specializing in soccer reporting. I debuted already as a free lance journalist; an article that I wrote has already been published in a magazine. From time to time, having Duchenne muscular dystrophy leads to certain advantages: I can easily meet my idols, see the picture with Robin van Persie at Old Trafford in Manchester!

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 Alec Syphas

Alec Syphas is 6 years old from Sheffield; UK. He is full of life and laughter and loves collecting teddy bears and playing the jurassic park game with his daddy. Alec’s best memory is painting and loves to paint pictures of everything and anything. Alec would like to have a dinner with pokemon; his nans dog Sammy and his toy dog teddy Whiskers. Alec’s day is a success when he is able to go outside and have a walk with his mummy and daddy.

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 Raimundo Magalhães

Olá. Eu sou o Raimundo. Tenho 15 anos e tenho uma Distrofia Muscular de Duchenne. Vivo em Portugal, no Porto, com a minha principal cuidadora, a minha mãe. Frequento a Escola Secundária Aurélia de Sousa. Tenho muitos amigos. Sou muito brincalhão e divertido. Como gosto de aventuras, faço parte do Agrupamento de Escuteiros 740 – Nossa Senhora da Areosa.

Adoro atividades radicais e, por isso, gosto muito de fazer jet-ski ou outras atividades que me façam subir a adrenalina.

A minha doença não me tem impedido de fazer as coisas de que gosto. Procuro manter-me ativo e explorar o que de melhor a vida tem.


Hello. My name is Raimundo. I’m 15 and I have a Duchenne Muscular Dystrophy. Living in Portugal, in Porto, with my most important caregiver, my mother. I attend the High School Aurélia de Sousa. I have many friends. I am very playful and fun. As I like adventures, I am part of the Scout Group 740 – Nossa Senhora da Areosa.

I love extreme activities and therefore really like to do jet skiing or other activities that make me climb the adrenaline.

The disease has not been an impediment to doing all the things that I like. I try to keep myself active and explore the good things of life.