Category: Duchenne Stories

I’m Cody,  I’m 26 years old and live with Duchenne muscular dystrophy which is a neuromuscular disorder that affects the muscles in your body and progressively makes them weaker. I was diagnosed at age 4 and had the ability to walk up until about Grade 2. My leg muscles were getting tired fairly easy so we decided a manual wheelchair would give me a better quality of life. By Grade 4, I was in a power chair as getting around was becoming harder and I wasn’t able to keep up with my friends.

For the most part I live a fairly normal life and not much stops me! I use a wheelchair van equipped with a lift and ramps built on my house. On November 17th 2010 I was brought into the Dartmouth General Hospital with pneumonia and a blood infection. I got out of hospital at the end of February, 2011 and because of the pneumonia I needed a trache and a feeding tube. I still have both to this day but I have been healthy ever since. I can no longer lift my arms up but I do almost anything everybody else does.

Of course there are times I’d like to be able to walk but for the most part I don’t even think about having a disability.

I support and believe in the wonderful people of Muscular Dystrophy Canada because they are getting awareness out into the community and providing a lot of hope to everybody affected by providing information, education and raising lots of money for equipment and hopefully one day perhaps even a cure.

My name is Connor Olsen, I’ve just turned six years old. I live with my mum, dad and little brother Kye who is 2 years old in Westgate on Sea in Kent. I love playing super heroes, Lego, going on my trampoline and swimming. Everyone says I’ve got twinkly blue eyes with massive eye lashes and a cheeky smile. My mum says she doesn’t want my cheeky smile to ever disappear.

Hola mi nombre es Facundo Llorente, tengo 3 añitos soy de Las Higueras, provincia de Córdoba, Argentina. Tuve hipoxia perinatal al nacer, lo que me dejo secuelas motrices y al año de vida me descubrieron Distrofia Muscular de Duchenne, todavía no se hablar por ahora solo digo papá, pero mis papis escribieron esto por mí. Voy a la guardería desde el año pasado todas las mañanas, vivo con mi mamá Valeria y mi Papá Franco, por ahora no tengo hermanitos. Soy un niño muy alegre y siempre estoy con una sonrisa (pero también tengo mi carácter), feliz cuando juego con otros chicos, voy a la plaza, me llevan a los jueguitos, salgo a pasear, y también me gusta disfrutar del aire libre andando a caballo.

Mis días son bastantes agitados a la mañana voy tres veces por semana a la kinesióloga y dos veces por semana a la fonoaudióloga a la tarde. Los fines de semana tratamos de disfrutarlo en familia.

Nuestro mayor deseo es lograr ser feliz a pesar de todo y que se descubra la cura para esta enfermedad.

Mi chiamo Jacopo, ho dodici anni, a settembre vado in II^ media, abito a Cordenons (Pn). Il mio sogno sarebbe quello di correre in motocross e diventare un Campione perché sono stra appassionato di questo sport, mi emoziona e mi esalta. Il 14 giugno, con la mamma e il papà siamo andati a Maggiora per vedere il Campionato Mondiale di motocross e tifare Toni Cairoli, è stato bellissimo, ho urlato come un pazzo.

Nel tempo libero mi piace fare passeggiate con la mamma così possiamo chiacchierare tanto e giocare con i videogiochi sportivi perché è come se io fossi dentro al gioco.

Se potessi cambiare qualcosa nel mondo vorrei fare in modo che nessun bambino nascesse con le malattie come la mia, che tutti i bambini potessero camminare, correre, parlare e toglierei anche la cattiveria e la violenza, eliminerei anche i ladri perché ho paura e non mi piace stare a casa da solo per colpa di questa gente malvagia.

Il mio ricordo più divertente è stato quando ero a Modena con la squadra di hockey. I genitori sono andati a visitare la città e noi ragazzi con la scusa che avevamo paura di scaricare le carrozzine e al pomeriggio avevamo la partita, li abbiamo convinti a lasciarci in albergo da soli e noi matti abbiamo iniziato a giocare a nascondino e ad andare su e giù con gli ascensori, abbiamo riso tantissimo e ovviamente scaricato le carrozzine.

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My name is Jacopo, I’m 12 and I’m starting 7th grade in september. I live in Cordenons (North-eastern Italy).

My dream is riding a motocross and becoming a champion; I’m really a huge fan of this sport, it excites me and touches me a lot. On June 14, I went to Maggiora with my mom and dad to watch the World Motocross Championship and to support Toni Cairoli. It was amazing, I cheered like crazy.

In my free time I like having walks with my mom because we can chat a lot and I like playing sports videogames because it feels like I’m inside the game.

If I could change something in the world, I’d make it impossible for any kid to have a disease like mine. I’d make it possible for every child to be able to walk, run and to talk. I’d also erase wickedness and violence, and I’d also eliminate the existence of thieves, because I’m scared being home alone because of bad people.

One of my funniest memories is about my stay in Modena with the wheelchair hokey team. Our parents went to visit the town and we convinced them to leave us alone in the hotel, with the excuse of not wanting our wheelchairs to run out of power before of the game in the afternoon. We had a lot of fun: we played hide and seek, we travelled up and down in the lifts, we laughed a lot…and our wheelchairs ran out of battery, of course.

Ahoj, Jmenuji se Vítek Poplštein, mám svalovou dystrofii typu DMD/BMD. Brzy mi bude třináct let.
Žiju s matkou v České republice, v Karlových Varech. Mám rád jídlo a rád se hezky oblékám, zajímám se hodně o skateboarding, street kulturu, fotografování, aktivně sleduji sociální sítě – facebook a hlavně instagram. Chtěl bych hrozně moc jezdit na skateboardu, zkouším na něm jezdit, ale je to pro mě velice náročné. Jsem docela dobrý plavec, plavu s postiženými plavci u nás v Karlových Varech a s klubem jezdíme na závody skoro po celé České republice a občas si jdu zahrát florbal na vozíku.
Ve volném čase chodíme s maminkou na vycházky do přírody a přitom fotografuji. O prázdninách jsme byli v Hřensku, v Českém Švýcarsku a tam jsem udělal parádní fotky. Sleduji také fotbal, hokej, florbal, bmx a fingerboarding. Občas hraju hry na svém notebooku nebo na Playstation Vita a také poslouchám Rock n Roll a Hip Hop Rap. Zajímám se o sledge hokej u nás v Karlových Varech. Až vyrostu, chtěl bych fotografovat oblečení do katalogů a lookbook, nebo pracovat s počítačem. Ale mým velkým snem je procestovat celý svět a to, se skateboardem a s fotoaparátem. Přeji všem lidem hodně zdraví a štěstí a sil v boji s naší nemocí.

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 (…).”

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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 (…)”.

Comme beaucoup d’adolescents français de 13 ans, Nicolas va au collège, a des copains, des projets et cultive une mèche blonde rebelle. Mais là où ses camarades gagnent en autonomie vis à vis du cocon familial, lui voit la force de ses muscles l’abandonner un peu plus chaque jour et sa dépendance s’accentuer. Nicolas est atteint de la myopathie de Duchenne, et le fauteuil est devenu maintenant indispensable.

“Progressivement, tous mes muscles vont être touchés. Aujourd’hui, c’est la marche. Après, je ne sais pas ce que ce sera. Je découvre au fur et à mesure.”   Mais au lieu de sombrer dans le découragement, Nicolas, sous l’impulsion de son père, Benoît, est bien décidé à aller chercher tous les moments de bonheur possible, et à les vivre plus fort. “Je vis le temps présent. Je suis content de me lever le matin (…).”

Comme beaucoup d’enfants qui voient une part d’eux-mêmes grandir plus vite sous l’épreuve de la maladie, le regard de Nicolas sur le monde est d’une grande lucidité. “Plus il y a des gens qui t’aiment, plus c’est facile. Plus tu as le sourire aux lèvres, plus tu as envie de vivre” explique-t-il. Et ce n’est pas parce que la mobilité est de plus en plus difficile qu’il faut céder à certaines facilités. “Il faut profiter, ne pas rester chez soi à ne rien faire, devant des écrans. C’est ce que tout le monde devrait faire”, souligne-t-il.

A l’urgence de la maladie, Nicolas et son père répondent par une autre urgence : celle du combat et de l’engagement notamment à travers le Téléthon en France .  Et ce n’est pas un hasard s’ils ont accepté d’être une des quatre familles porte-parole de la nouvelle campagne du Téléthon

Malgré l’évolution de sa maladie, Nicolas se rend compte qu’il bénéficie d’avancées dans la prise en charge  auxquelles les enfants des premiers Téléthons par exemple n’avaient pas accès. Il est donc naturel pour lui de donner son temps et son énergie pour que son engagement d’aujourd’hui puisse aider les enfants qui seront diagnostiqués dans 10 ou 20 ans. “Pour que leur vie soit meilleure que la mienne” conclut-il.

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Like many French  teenagers his age, Nicolas, 13, goes to junior school, has friends and projects and likes to style his blond flyaway hair locks.

But unlike his schoolmates who gradually gain more independence from their family homes, Nicolas has to face ever-decreasing muscle strength and increasing disability and dependency. Nicolas has Duchenne muscular dystrophy and now relies solely on a wheelchair to move around.

“All of my muscles will be gradually affected. I cannot walk anymore. I don’t know what will happen next. I just take things one at a time.” Instead of indulging in despair, Nicolas, with the help and support of his father, Benoît, is determined to enjoy happy moments where they can be found and to live life to the fullest. “I live in the present, I’m glad to get up every morning (…)”.

Like many children who had to grow up fast because of the onset of disease, Nicolas shows great clearsightedness. “The more you’re surrounded with people who love you, the easier it is. Put a smile on your lips as often as possible and you’ll want to live to the fullest”, Nicolas explains. Moving around gets more difficult every day, but that should not lead you to take the easiest path. You’ve got to enjoy life, don’t stay home in front of the TV or computer screens. That’s what everybody should do”, Nicolas adds.

Faced with progressing disease, Nicolas and his father are committed to the urgent battle against it, through their involvement in the French Telethon. They have accepted to speak out as one of the four ambassador families during the 2015 Telethon campaign.

In spite of the progression of his condition, Nicolas knows that he does benefit from the advances made in the care of children with Duchenne muscular dystrophy since the first Telethon campaigns. Therefore, he believes it is only natural that he should invest time and energy to help children who will be diagnosed with the disease in 10 or 20 years from now. “For them to have better lives than mine”, he says.

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.

Este es mi hijo Carlos Luis Sulbaran Saez tiene distrofia muscular tipo duchenne tiene 14 años estudia 1er año de bachillerato dejo de caminar en el 2010 le gusta mucho jugar video juegos, y quiere ser ingeniero en sistema, somos de Trujillo Venezuela.

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!

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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!