Hi! My boys have their own YouTube channel where they post what they do, different challenges and stuff they think is fun. One time they posted a video where they told about their disease. They are active with wheelchair hockey, and they travel on tournaments with the team. They are like other boys in the same age, busy with computers and gaming. Since we as parents are divorced they have two homes, witch means that they are lucky to get two birtdays, which they see as a positive thing.
Daniel wants to be a trainer for soccer. His favourite team is Tottenham, and he knows everything about english football!
Simen wants to work with animals, he just looove all kinds of animals.
Story by Leandro Ayala
Hola ¿Cómo les va? Mi nombre es Leandro damian Ayala, vivo en argentina tengo 27 años, tengo un intruso en mi cuerpo llamado Duchenne que convivimos desde los 6 años y tenemos una ardua competencia para ver quien vence a quien y yo creo que seré el vencedor. Soy una persona fuerte, por momentos débil. Simpática, me gusta hacer reír a las personas, escucharlas y ayudar con consejos. Me gusta mucho el rock, navegar por internet, hoy en día estoy buscando que estudiar. No soy creyente de religiones, mi religión es mi familia, mis amigos, el perro y el sol. Mis sueños son que llegue una cura o mejora de la enfermedad y poder formar una familia. Me gusta estar con mis amigos, salir a algún recital de rock, mirar futbol, tomar tragos, jugar a la play, salir con la familia e ir al teatro.
Me gustaría hacerles llegar un plato de comida a todos los que les falta en el mundo. Mi experiencia favorita fue cuando tuve la oportunidad de ir a un recital del indio solari, el indio solari fue el cantante de una banda de rock muy grande llamada Los redonditos de ricota. Fue el recital con mayor convocatoria de la historia en el rock argentino, presencie el “el pogo mas grande del mundo” con más de 17000 personas. Mi mejor recuerdo fue cuando pase a la secundaria que a partir de ese momento conocí a personas que no les importaba la condición física y me aceptaron como era. Mañana voy a intentar ser mejor persona que hoy y tratar de cumplir alguna meta. Mi persona favorita es sin duda mi hermano Ariel, porque desde chico me cuida, me ayuda, me aconseja, él es todo para mí. Mi día es un éxito cuando comparto algo en familia estando todos juntos y sin peleas.
Story by Rafael Lellis
Meu nome é Rafael Lellis, tenho 24 anos,Moro no Rio de Janeiro. Sou atleta de Power Soccer ou Futebol em Cadeira de Rodas Motorizada, o futebol é minha paixão e sempre dei meu jeito de jogar. Enfrento a cada dia os desafios da melhor maneira possível e com bom humor. Sempre que posso estou com meus amigos, aproveito também para sair nas nights para me divertir e sempre que eu posso vou para cidade de Saquarema encontrar meus amigos e aproveitar as lindas paisagens . Meu maior sonho como atleta é vestir a camisa do Clube de Regatas do Flamengo.
Story by Miguel Federico Martinéz
Me llamo Miguel Federico Martinéz tengo 16 años nací el 27 de mayó de 1999 soy del distrito federal delegacion magdalena contreras. Me dedico a investigar sobre carros,planetas y video juegos.
Story by Alexandru Daniel Croitoru
Urcă orice munte, treci peste orice pârâu, / Curcubeul îl urmează, până ce visul tău se realizează
Numele meu este Alexandru Daniel Croitoru am 9 ani si sunt din Bucuresti, Romania. Sunt un copil cu multe visuri frumoase şi îndrăzneţe dar nu imposibil de realizat. Imi place sa ma joc sa cant sa dansez sa calatoresc si sa mă bucur de orice clipă a copilăriei . Am invatat că un vis poate prinde aripi dacă există voinţă, iubire, muncă si credinţă. În visele mele sunt , un înger cu baghetă fermecată care îndeplineşte tuturor dorinţele frumoase. Acestea sunt versurile mele preferate dintr-o poezie pe care am învățat-o la şcoală la ora de engleză care ma motiveaza si imi dau incredere.
„Climb every mountain, pass every stream, / Follow the rainbow, till you find your dream.”„Urcă orice munte, treci peste orice pârâu, / Curcubeul îl urmează, până ce visul tău se realizează.”
Sunt un copil ambitios , energic şi nu-mi poate lua nimeni dreptul la a visa la un univers al meu special, plin de bunătate, iubire si frumuseţe. Daca as avea puterea de a schimba ceva in lume as crea o lume minunata a copiilor cu mult soare si mii de jucarii pentru toti copii, o lume a povestilor. Zilele din timpul saptamanii pentru mine arata ca o cursa contra timp deoarece ne place sa dormim si atunci ne trezim la limita si incercam sa nu uitam sa ne spalam pe dinti, sa mancam, sa ne imbracam, sa luam ghiozdanul, temele si sa mergem in graba catre scoala. Seara la cina as invita parintii deoarece clipele frumoase petrecute alaturi de cei dragi, sunt cele mai frumoase intr-o familie. Diminetile din weekend sunt cele mai frumoase deoarece lucrurile se fac intr-un ritm normal si fiecare lucru se face cu placere si la timpul lui. Mami pregateste micul dejun iar apoi sunt liber sa ma joc pe calculator sau pe X-box jocurile preferate . Tot in weekend am in program sa merg impreuna cu tatal meu la piscina sa innot iar apoi in parc , la film sau in vizita la bunici si la verisoarele mele. Parintii mei sunt cele mai importante persoane din viata mea. Cea mai frumoasa amintire a mea a fost legata de vizita la parcul de distractii Lego Land din Germania de anul trecut . A fost cel mai frumos cadou al parintilor pentru mine .
My name is Alexandru Daniel Croitoru. I am 9 years old and I live in Bucharest, Romania.
I am like any other child on this earth, with lots of beautiful and sometimes daring dreams, but none of them impossible to accomplish. I like very much playing, dancing, travelling and, in general, I enjoy any moment of my childhood. I have learned that a dream can become true if there is enough will, love, work, and belief. In my dreams I am like an angel with a magic wand which fulfills everyone’s most beautiful wishes. These are my favourite rhymes from a poem I’ve learned at my English classes in school. It motivates me a lot and fills me with huge trust:
“Climb every mountain, pass every stream, / Follow the rainbow, till you find your dream.”
I am an ambitious kid filled with energy and nobody can steal my right to dream of my special universe, full of good deeds, love and beauty. Had I have the power to change something in this world, I would create a sunny and marvelous children’s world filled with thousands of toys for all kids, a sort of fairy tales’ world. The usual week days are kind of a race against time. We like oversleeping a little and when we finally decide to jump out of our beds we struggle to brush our teeth, eat, get dressed, prepare the school backpack, put my homework inside, and race to school. In the evening, at dinner time, I would invite my parents since there is nothing better than the time spent with our loved ones in the middle of the family. Of course, the weekend mornings are the best, because things are no more a race, we take our time, everything is done at a normal pace and with pleasure. The rush is gone! Mummy prepares the breakfast, then I am free to enjoy my preferred games that I play on the computer or on the X-box. My parents are indeed the most important persons in my life. My best memory is the visit I made last year at the Legoland Park in Germany. It was the most beautiful present my parents gave me.
Story by Sébastien Roch
Hello, my name is Sebastian, I am 32 years old. I live in a small village in the French Alps, near the Swiss border. Grace has a cable car near my home, I can admire a magnificent panorama and Lake Leman. I was born in Indonesia and have been adopted.
I love nature and animals, since childhood I was surrounded by cats dogs, they give me the strength to live without them I would not want to fight . Nature and animals are my strengh. I have a great interest in Eastern cultures, Buddhism. I’m a fan of astronomy and I make beautiful videos and photo montages. I love computers. After obtaining a diploma of general culture, I could not continue higher studies because I have been harassed by teachers. Apart from my mother, nobody, no association helped me.
But I fight against the disease, I want to live.
Story by Luis Armando Antuna Valiente
Hola! Mi nombre es Luis Armando Antuna Valiente, he cumplido 14 años, tengo 5 gatos una tortuga y dos pájaros. Terminé el segundo de secundaria, tengo distrofia muscular Duchenne, me gusta jugar Xbox en linea. Mi juego favorito es Grand Theft Auto V. Vivo con mis padres en México.Les quiero decir a todos los niños que tienen Duchenne que sean felices y le echen muchas ganas, espero que muy pronto exista un medicamento en México y en todos los lugares del mundo que nos alivie, cure y haga que caminemos y vivamos más felices todos los niños que luchamos a diario con esta enfermedad al igual que sus familias.
Hi! My name is Luis Armando Antuna Valiente, I turned 14 years, I have 5 cats, a turtle and two birds, I finished second grade, I have Duchenne muscular dystrophy. I like to play games on the Xbox online. My favourite game is grand theft auto V. I live with my parents in Mexico. I would like to say to all boys with Duchenne that I wish them to be happy and enjoy life, I hope that very soon a drug will be available in Mexico and the rest of the world that will relieve, cure and make us walk so that we, and our families, all can live happier lifes.
Story by Florencia Schwab
Mi nombre es Florencia Schwab, tengo 8 años y vivo en Coronel Suárez, Provincia de Buenos Aires, Argentina. Estoy cursando 3º grado del siclo básico, me gusta ir a la escuela y compartir cosas con mis compañeros de la escuela. Yo tengo distrofia muscular desde nacimiento, tengo mi papá y mi tia que también tienen distrofia muscular; camino por mis propios medios aunque tengo dificultades para correr, subir escaleras, se me caigo me cuesta levantarme y demás cosas, pero trato de hacer una vida lo mas normal posible. Cuento un día mio como es: me levanto a las 7 Hs a desayunar y a las 8 Hs ingreso a la escuela, salgo a las 12 Hs, me pasan a buscar mis papas y vamos a casa a almorzar, después hago los deberes si tengo y en cada día de la semana por la tarde tengo diferentes actividades; los lunes paso la tarde con mis abuelos y tengo kinesiología, los martes voy a inglés y natación, los miércoles tengo terapia física y kinesiología, los jueves inglés y natación y los viernes terapia física. Los fines de semana me gusta dormir, invitar alguna amiga a jugar y jugar con mi tablet. Me gusta ayudarle a cocinar a mi mamá y a mi abuela. Me gustan mucho los animales, especialmente los perros. Me gusta ir de vacaciones y poder estar en la pileta lo mas que puedo, me gusta salir a pasear de noche y comer pizza o panchitos. Me gustaría poder viajar a Disney.
My name is Florencia Schwab, I am eight years old and I live in Coronel Suarez, Buenos Aires, Argentina. I’m in 3rd grade, I like going to school and to share things with my classmates. I have muscular dystrophy since I was born, my dad and my aunt also have muscular dystrophy; I can walk on my own, but I have difficulties running, climbing stairs, I fall and it is hard for me to get up and other things, but I try to make life as normal as possible. I will tell how my day looks like: I get up at 7am for breakfast and I go to school at 8am, I leave at 12pm, my parents pick me op and we go home for lunch, then do homework and each day during the week in the afternoon I have a different activity; Mondays in the afternoon I stay with my grandparents and I have physical therapy and kinesiology, Tuesdays I have English and swimming classes, on Wednesdays have physical therapy and kinesiology, on Thursdays English and swimming classes and Fridays swimming and physical therapy. On weekends I like to sleep, invite a friend to play and to play with my tablet. I like to help my mother and grandmother cooking. I love animals, especially dogs. I like going on vacation and to be in the pool as much as I can, I like to go for a walk at night and eat pizza or panchitos. I would love to go to Disney.
Story by Teun van Wiggen
Hoi, ik ben Teun. Ik woon in Nederland en ben 6 jaar. Ik ga al naar groep 3 na de zomervakantie. Ik speel graag met mijn vriendjes, vriendinnetjes of met mijn zusje van 4. Ik hou van racen op mijn fiets. Ik gebruik mijn loopfiets voor als we een eindje moeten lopen. Ik fiets heel graag naar school en doe vaak een race in de straat samen met mijn zusje. Ik ben ook dol op zwemmen en ga elke week naar zwemles. Ik bouw graag alles van Lego, of vlieg door het huis met Dusty van Planes (Disney). Ik wil later piloot worden!
Hi, my name is Teun. I live in The Netherlands and I am 6 years old. I will join the third class of elementary school after the summer holiday. I enjoy playing with my friends or with my 4 year old sister Kiek. I love racing on my bike. I use my walking bike when we go for a walk. I love cycling to school and doing races in the street with my sister. I also love swimming and go to swimming lessons every week. I often build sculptures from Lego, or ‘fly’ with Dusty of Planes (Disney). I want to become a pilot some day!
Story by Carlos Daniel Aleman Ferrer
Mi nombre es Carlos Daniel Aleman Ferrer tengo 13 años de edad y soy de Mexico. Voy a iniciar la secundaria este mes. Mi pasatiempo es jugar Xbox, mi juego favorito es FIFA y siempre juego con el Club America. En equipo de Mexico, mi jugador favorito es Dario Benedetto, que también juega en el club America, cuando juego FIFA en Xbox mi especialidad son los goles de cabeza. Mi sueño es conocer a los jugadores del America. Tengo 1 hermano de 10 años que se llama Edwin, en ocasiones nos peleamos porque el es muy desordenado. Cuando nos llevamos bien jugamos Xbox. Voy al CRIT 2 veces por semana donde hago terapia física, con mis amigos Cesar, Elliot y Micky que también tienen distrofia de Duchenne. Me gustaría decirle a todos los niños de distrofia que le echen muchas ganas en todo lo que hagan.