Hello. I’m Joshua and I’m 6 years old. Mummy and Daddy adopted me when I was 3 but have taken care of me since I was only 8 weeks old as I was fostered. I love dinosaurs, sharks and Spiderman and watching Minions Movies.
We have been to lots of places to make happy memories together and just been to Australia where I went on a helicopter ride, fed kangaroos and stayed in the rainforest. I would love to have a house without stairs and a classic car for Daddy to drive me around in.
Hola! Soy Aldo Alejandro Jurgeit, tengo 9 años, vivo en la ciudad de Quilmes, pcia d Bs As, Argentina, hemisferio sur del planeta tierra. Quiero contarles que mi día es exitoso cuando me divertí y aprendí cosas. Mi actividad favorita es reunirme con mi amigos! Y lo mejor es cuando hago “pijamadas” en mi casa porque nos quedamos despiertos hasta la madrugada. También me encanta pasear, leer, escribir historietas y dibujar! Si pudiera invitar a una cena mágica a tres personas, estas serían: mi mamá Celeste, mi papá Nacho (porque los amo) y José de San Martín (libertador de América).
En el día realizo muuuuchas actividades -me despierto 7 am, desayuno y tomo mi medicacion, voy contento a mi Colegio Eduardo Holmberg (alemán) de Quilmes, en el club hago gimnasia y natación, además cuatro terapias semanales (kinesiologia, fonoaudiologia, terapia ocupacional y psicología) y controles medicos en el hospital Garrahan- la verdad, todo esto me cansa un poco, pero lo hago desde muy chiquito, porque sé que me hace bien para mis músculos, mi salud!
También me canso cuando juego al fútbol por ejemplo, y lo resuelvo saliendo de la cancha a filmar el partido ó árbitro ó me siento a ver… ni loco me pierdo algo en mi vida q sea divertido!
La persona favorita que tengo a mi alrededor siempre, es mi abuela Nanci… ella me brinda mucho cariño, me cuida y hago lo que quiero en su casa ! Ahh me olvidaba de contarles que me encantan los perros y tengo tres! uno en mi casa dónde vivo con mi mamá, otro en la de mi papá y otro en la de mis abuelos!
Sueños? No tengo pensado ningún sueño…no quiero nada más! Soy feliz!
Chau, Aldo.
Hi, Ik ben Dave 13 jaar en woon met mijn ouders en zusje in Rotterdam (Nederland). Ik ben gek op sport, kijk graag voetbal en ga soms een wedstrijd kijken van Feyenoord in de Kuip, waar ik erg van geniet. Zelf doe ik ook aan sport “Boccia”, dit is een paralympische sport, het is een bal/werp spel wat lijkt op Jeu des Boules, alleen met zachte ballen en je speelt het in een zaal. De sport is nog niet zo bekend, ik speel het nu 3 jaar en ben met een aantal clubgenoten geselecteerd om bij het talent team van het Nederlands Boccia Team te komen, zo zie je maar dat je met een handicap nog heel wat kunt bereiken, ook in sport.
Hi, I’m Dave, 13 years old; I live with my parent and little sister in Rotterdam in the Netherlands, I love sports and like to watch a match from Feyenoord in the Kuip stadium, I enjoy that very much. I am also doing a sport named ‘Boccia’ . This is a Paralympics sport, it’s like pétanque only with soft balls and played indoor. Boccia is still an unknown sport, I play it for 3 years now and with some team members I am selected for a talent team from the Dutch Boccia team. So you can see you can always achieve something with a handicap even in sports.
Numele meu este Carciumaru Florin si am saptesprezece ani. Locuiesc in Romania intr-un oras numit Pitesti si ce pot sa va spun este ca ea are peisaje frumoase,locuri istorice si monumente, inafara de asta ea deasemenea are multe manastiri. Daca doriti sa vizitati tara mea, pentru a stii despre natiunea mea,religie si obiceiuri, va rog veniti. Visul meu este sa fiu un programator IT in grafica, si deasemenea un tehnician IT, inafara de asta deasemenea vreau sa fiu un preot slujind la o manastire si sa termin facultatea de politehnica. Cand este weekend, imi place sa ma plimb afara o ora, prin jurul cartierului si deasemenea sa ma duc la sala, facand niste exercitii. Dupa ce fac asta, eu vin acasa si apoi citesc ceva sau ma joc niste jocuri pe computer cu prietenii mei online sau singur. Daca este ceva sa schimb in lume, este speranta la un viitor mai bun deoarece cand spui ,,Nu putem face nimic”, aceasta nu este adevarat. Nu politicienii schimba tara, ci oamenii care locuiesc in aceea tara. Ei doar asculta plangerile noastre apoi ei fac ceva cu ajutorul nostrum. Deci noi suntem puterea nu ei, si trebuie sa na ajutam reciproc, nu continuand sa fim prosti si sa mergem inainte pe cont propriu. Daca a-si putea invita trei prieteni cei mai buni, care vor fi varul meu, doi prieteni care I-am intalnit la un sanatoriu, noi am vorbi de fapt despre momentele noastre din ultimul timp,despre aspiratiile noastre si distractii si despre ultimele jocuri jucate si ultimele filme vazute. Unul dintre cea mai favorita experienta este cand am devenit un crestin responsabil. Aceia s-a intamplat cand mama mea a aflat despre boala mea cand aveam opt ani. Din acel moment, am inceput sa ne ducem la biserica in fiecare Duminica, apoi sa mergem la toate sarbatorile.Si eu pot sa ma spun ca este important sa mergem pe drumul lui Dumnezeu deoarece aceasta este singura fiinta care Ne tine in viata si in siguranta. Amintirea mea cea mai buna este cand am luat primul meu 10 la scoala la cursul meu favorit,Matematica.Aceasta s-a intamplat cand aveam unsprezece ani cand dadeam teza la Matematica. Amintirea mea cea mai amuzanta este cand ma jucam cu cainii mei de la tara, si le dadeam niste paine,dar acesti doi caini erau legati impreuna si se incaierau reciproc deoarece ei nu vroiau sa imparta mancarea. Cand ma trezesc de dimineata, mereu imi iau vitaminele si energia din mancarea mea care este mereu un suc de fructe (banane,portocale,grefe sau avocado), deasemenea un lapte de migdale cu cereale. Apoi ma duc la scoala, si dupa scoala, imi fac acasa temele si mereu imi fac exercitiile pentru a nu avansa boala.Cand sunt in vacanta, ma joc cu lucrurile mele sau scriu ceva.Deasemenea imi iau responsabilitatile ca crestin si ma rog in fiecare dimineata si noapte.Dupa ce fac toate acestea ma duc in pat si ma pregatesc pentru urmatoarea zi. Deoarece am fost interesat in ultimul timp cu tratamentul si sanatatea mea, m-am dus la presedintele asociatiei Duchenne din Romania,Isabela Tudorache si am aflat ce sa fac in continuare, si am facut niste analize despre sanatatea mea, si am vazut ca trebuie sa fac mai mult pentru a ma pastra bine, si deasemenea sa am grija de corpul meu, care este un pic mai gras. Maine, o sa fac exercitiile pe care doctorii mi-au aratat ieri, pentru a-mi remedia problemele si deasemenea o sa fac o plimbare pentru a ma pastra bine. Persoana mea cea mai favorita din jurul meu este fara indoiala mama mea deoarece ea m-a ajutat de la inceput, ea mi-a dat putere,curaj,cunoastere si puterea de a merge inainte cu tratamentul bolii mele. Aceasta este povestea mea, si imi doresc decat sa ma vindec de aceasta boala, deoarece nu-mi place sa fiu mai rau sau sa fim in scaun cu rotile. Daca cineva vrea sa ma ajute va rog faceti-o deoarece vreau sa fiu un om sanatos si sa merg oriunde fara frica.
My name is Florin Carciumaru and I am seventeen years old. I live in Pitesti, Romania. What I can tell you about my country is that it has beautiful landscapes, historical places and monuments; besides that it has many monasteries. If you want to visit my country, to get to know about our nation, religion and habits: please come. My dream is to become an IT programmer in Graphics, and an IT technician, besides that I also would like to be a priest serving at a monastery and to finish a polytechnic college. On the weekend I like to walk outside for an hour around the neighborhood, and to go to the gym. When I get home I read something or I play computer games with my friends online or alone. If I could change something in the world, it would be the hope for a better future, because when you say “There is nothing we can’t do”, this is not true. Not the politicians change a country, but the people who live in that country. They just listen to our complaints and then they do something with our help. So we have the power, and we must help each other, we must stop being stupid and move forward on our own.
If I could invite my three best friends to dinner, it would be my cousin and two friends which I met in a sanatorium. We would talk about our aspirations and pastimes, and about our the games we played and the movies we watched. One of my most favorite experiences is when I was eight years old and I became a responsible Christian. That happened when my mother found out about my disease. From that moment, we began to go to church every Sunday and we went to all celebrations. I can tell you that it is important to move on God’s way, because He keeps us alive and safe. One of my best memories is when I was eleven years old and I got my first 10 at school for my favorite course, mathematics. Another funny experience happened when I was once playing with my dogs on the countryside and feeding them bread. The two dogs were bound together and they clashed on each other because they didn’t want to share their food.
When I wake up in the morning, I always get my vitamins and energy from my food which is always a fruit juice (banana, orange, grapefruit or avocado), with almond milk and cereals. Then I go to school and after school I do my homework and my exercises. When I am on vacation, I play with my things or I write something. I also take my responsibilities as a Christian, I pray every morning and night. Lately I have become more interested in my treatment and my health, I went to Isabela Tudorache, the president of Parent Project Romania, and I found out what I to do further. I made some analyses about my health, I know now that I need to do more in order to stay good and I also need to take care of my body. Tomorrow I will do the exercises that the doctors showed me yesterday and I will go for a walk. My favorite person to have around me is undoubtedly my mom, because she helped me from the beginning, she has given me strength, courage, knowledge and the power to move forward with the treatment for my disease. This is my story, and I wish to cure from this disease, because I don’t like it to get worse or to have to go into a wheelchair. I want to be a healthy man and to go anywhere without fear.
Soy Wilson Ledesma de General Pinedo, provincia del Chaco, tengo 30 años, nací el primero de Noviembre del año 1984. Soy profesor de inglés, escritor, abogado especializado en Derecho de Familia. Mi mejor recuerdo es cuando nos recibimos con mi mamá de abogados… tuve una gran cantidad de buenos sentimientos. Trabajo actualmente y desde hace más de tres años en el Juzgado de Paz de mi localidad. Me gusta compartir tiempo con mi familia en el lugar que sea, puesto que durante la semana con nuestras ocupaciones no nos vemos demasiado. Realmente mis personas favoritas son mi grupo familiar… Ver Los Simpsons, Cámara del Crimen cuando estoy solo o acompañado por alguien. Mi experiencia favorita es ir con mi familia a Talahuasi en Carlos Paz y la sigue siendo… ese lugar es un paraíso. Hoy me levanté a las cinco y media de la mañana, fui al juzgado desde las seis y media hasta la una, almorcé, tuve una pequeña siesta en la silla, estudié el nuevo código civil y comercial (para prepararme para rendir para juez de familia). Ayer hice lo mismo que hoy, cené a las 7, vi un rato televisión y a las 10 a la cama. Si Dios quiere mañana haré lo mismo que ayer y hoy J. Mi día es un éxito cuando me siento bien con Dios y conmigo mismo. Si pudiera cambiar algo en el mundo, lo acercaría a Dios. Cada vez se ven cosas peores; no hay amor, es todo dinero, sexo, libertinaje. Es difícil para el hombre reconocer algo superior pero por no hacerlo así estamos… Si pudiera invitar a una cena a tres personas serían mi abuela Lucia, mi abuelo Ledesma, por ser familiares queridos, a Santiago y a Teresita por ser grandes amigos. Me excedí en una… pero podemos hacer un lugarcito. Mi sueño es poder recuperar las fuerzas para tener más independencia y mejorar la calidad de vida tanto mía como de los que me rodean.
I am Wilson Ledesma from General Pinedo, The Province of Chaco, I was born on 1 November 1984 and I am 30 years old. I am an English teacher, writer, lawyer specialized in family law. My best memory is when I became a lawyer together with my mom… I had a lot of good feelings. Currently I am working for more than three years in the Magistrates Court in my town. Over the weekend I like spending time with my family, because with our jobs we do not see each other often during the week. When I am alone or with someone, I like to watch The Simpsons or Criminal Chamber. My favorite experience is to go with my family to Talahuasi in Carlos Paz and it still is… that place is like paradise. Today I got up at half past five, I went to the court at 6:30 to 1:00, had lunch, had a little nap in the chair, and I studied the new Civil and Commercial Code (to prepare myself to become a family court judge). Yesterday I did the same as today, I had dinner at 7, I watched television for a short while and at 10 I went to bed. If God wants, tomorrow I will do the same as yesterday and today. J My day is a success when I feel good and I feel good with God. If I could change something in the world, I would make it closer to God. Every time things get worse; there is no love, it’s all about money, sex, debauchery. It is difficult for man to recognize something bigger but since we are not doing so, the world is as it is. If I could invite three people to dinner it would be my grandmother Lucia, my grandfather Ledesma, as being family members, and James and Theresa for being great friends. It is one extra, but we could add another seat. My dream is to recover strength to become more independent and improve the quality of life for myself and the people around me.
Me llamo Alex André Dorrego. Tengo 8 años y tengo DMD, me lo detectaron cuando tenía 6. Soy simpático y mi sonrisa conquista corazones. Tengo dos hermanos con los que comparto uno de mis pasatiempos favoritos que es bailar. También me gusta mucho armar historias increíbles con mis muñecos y tengo una gran imaginación. A parte me gusta jugar con mis autos y camiones, disfrazarme e interpretar personajes. Siempre hago de abuelo. Lo que más me gusta es cocinar. No sólo en casa. En mi escuela especial hay talleres y uno de ellos es cocina. Ahí soy más que feliz, escucho con atención la receta, sigo todo paso a paso y disfruto preparando deliciosas comidas. ¡Me encantaría ser cocinero cuando sea grande!
My name is Alex André Dorrego. I am 8 years old and have DMD, I was diagnosed when I was 6 years old. I am sympathetic and with my smile I conquer other people´s hearts. I have two brothers with whom I share one of my favorite hobbies: dancing. I also like to tell amazing stories with my dolls and I have a great imagination. Besides this, I like playing with my cars and trucks, dressing up and playing characters. I always act like I am a grandfather. I like cooking at home and at school, as there are special workshops and one of them is kitchen. I really enjoy to listen carefully to the recipe, follow all the steps and enjoy preparing delicious meals. I would love to be a chef when I grow up!
Me llamo Mauricio Nuñez, tengo 7 años y vivo en Saenz Peña, Provincia de Buenos Aires. Me diagnosticaron DMD en diciembre de 2014. Mi familia está formada por mis padres Luis y Marcela, mis hermanas Leonela y Victoria, y mi abuela Marta. Se dieron cuenta de que algo pasaba cuando tenía 3 años porque no corría, no subía las escaleras, me caía y en el jardín le pedía siempre ayuda a mis seños, ellas citaron a mis padres y les comentaron lo que ocurría. Primero fuimos a la psicóloga y mi pediatra Hugo me envió al hospital italiano donde me atendió un neurólogo, empezaron a estudiarme y ellos ya sospechaban que se trataba de Duchenne, me hicieron una biopsia y estudios genéticos.
En la actualidad voy al kinesiólogo, hago terapia ocupacional e hidroterapia, me acompañan a veces mi mama, mi papa y mi hermana mayor, mi familia me da mucho amor y mi abuela Marta es la que me consiente en todo. Estoy en segundo grado del colegio Nuestra Señora del Carmen, me acompaña Natalia, mi seño integradora, y Mónica, mi seño del grado; me llevo muy bien con mis compañeros, siento que me ayudan y protegen, eso me gusta.
En los momentos libres me gusta dibujar autos y pintarlos, y lo que más me fascina es nadar, me siento un pez en el agua y me puedo mover como quiero.
Ojala algún día llegue la cura de esta enfermedad para poder estar mejor y poder jugar al futbol en el equipo de river del que soy fanático.
My name is Mauricio Nuñez, I am seven years old and I live in Saenz Pena, in the province of Buenos Aires. I was diagnosed with DMD in December 2014. My family members are my parents Luis and Marcela, my sisters Leonela and Victoria, and my grandmother Marta. They started noticing that something was going on when I was 3 years old, because I was not running, not climbing the stairs, I fell in the garden and I always asked for the help of my teachers. First we went to my psychologist and my pediatrician Hugo sent me to the Italian hospital where I was attended by a neurologist.
Nowadays I go to the physiotherapist, I do occupational therapy and hydrotherapy together with my mom, my dad or my older sister. My family gives me a lot of love and my grandmother Marta let me do whatever I like. I’m in second grade of Our Lady Carmen. I get along very well with the other children, I feel that they help and protect me, and I like it very much.
In my free time I like to draw and paint cars. Swimming fascinates me, I feel like a fish in the water and I can move the way I want.
Hopefully one day there will be a cure of this disease so I can play in the River Plate soccer team, of which I am a big fan.
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!
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.
“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 (…).”
“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 (…)”.