Author: worldduchenne

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..

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!

Eu me chamo André, hoje tenho 6 anos e fui diagnosticado aos 2 anos. Sou uma criança muito feliz, alegre e pura. Tenho muita vontade de viver, gosto de estar com pessoas e principalmente as que eu amo. Sou criativo, inteligente e muito carinhoso. Gosto de viver em contato com a natureza e descobrir coisas, sou muito curioso. Apesar das limitações que aparecem aos poucos, nada me incomoda, com minha família estou seguro e confiante! Sou brasileiro, mas hoje estou morando na França. Conhecer lugares diferentes e experimentar o que a vida nos oferece é o melhor que eu posso viver. 

My name is Andre, today I am 6 years old and I was diagnosed at the age of 2. I´m a very happy child, cheerful and pure. I really want to live, I like being with people and specially, I love them. I am creative, smart and very loving. I like living in contact with nature and discovering things, I am very curious. Despite my limitations, which are slowly showing, nothing bothers me, with my family, I am safe and confident! I’m Brazilian, but I am now living in France. Knowing different places and experiencing what life offers us is the best I can live. 

Je m’appelle Gabin, j’ai 4 ans et demi, et quand je serais grand, je serai policier ou dresseur de tigres, ou les deux! 

My name is Gabin, I am 4 and a half years old, and when I grow up, I’ll be policeman or tiger tamer, or both! 

Witam ! Nazywam się Maksim Volkov, mam 9 lat i uwielbiam pływać tak bardzo, że nawet otrzymałem za to medal i puchar. Mieszkam z moją siostrą Katią i rodzicami niedaleko Gdańska, w północnej części Polski. Moim największym marzeniem jest zostać w przyszłości detektywem, ponieważ uwielbiam rozwiązywać zagadki. Lubię chodzić do szkoły ponieważ mam tam wielu przyjaciół i bardzo lubię moją wychowawczynię, panią Beatę, która pomaga mi podaczas lekcji w klasie. Mój dom jest bardzo radosny, ponieważ mam dwa koty i dwa psy, z którymi spędzamy dużo czasu na zabawie. Najbardziej lubię mojego kota, który przypomina Garfielda, ma na imię Twister, śpi ze mną w łóżku i zawsze tuli się do mnie kiedy jestem smutny. Gdybym mógł zmienić coś na świecie to chciałbym  zmienić smutnych ludzi na szczęśliwych ludzi. 

Hi! My name is Maksim Volkov, I am 9 years old and I love to swim so much even I received a medal and trophy. I live with my sister Katia and my parent in Gdansk in the North of Poland. My dream is to become a detective, because I like to solve a mystery. I like to go to school because I have many friends there, and I like very much my teacher Beata who is helping me in the classroom. My house is very cheerful because we have two cats and two dogs, so we spend a lot of time to playing with them. I like most of my cat that looks like Garfield, he’s name is Twister and he sleep in my bed and snuggles up to me when I’m sad. If I could change something in the world I’d like to be able to change sad people into happy people. 

Hi my name is Harry Halpin and I am 4 years old. I live in Formby, England with my mummy, daddy and sister Grace. My family are very important to me. I love seeing my grandparents as often as possible. My Nana has a vegetable patch. I enjoy planting the seeds, watering them and watching them grow.  I also bake bread with my nana and love eating the crust when it is warm. My Granddad has kept all my daddy’s old toys and I spend hours playing with tractors and cars. He always takes us out to my favourite restaurant for pizza too. 

My favourite place is being in the swimming pool. I love going underwater and feeling the freedom to move around. My legs don’t feel as stiff and my body is easier to move around. I hope one day I can swim and will learn to be a deep sea diver. 

I am also starting school this September this will be a big change for me but I know I will be learning lots of new skills and will have a great time making new friends. 

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 

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. 

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.

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!!