Tag: WDAD 2015

Hola! Soy Jorge Mancera Reyes, tengo 18 años. Desde los 12 deje de caminar pues tengo Distrofia Muscular Duchenne. Actualmente curso la preparatoria en el sistema abierto. Mi sueño estudiar la universidad y terminar la carrera en física para después ser astrónomo.

La foto es con Nani un ex jugador del Manchester United, fue en Guadalajara Jalisco y estuvieron otros amigos con distrofia. Fue en el año 2010. Esta foto es un ejemplo de que no hay limites si queremos hacer algo.

Saludos desde México!

Hello! I am Jorge Mancera Reyes, I am 18 years old. I have Duchenne muscular dystrophy and I stopped walking when I was 12 years old. At this moment I go to a public high school. My dream is to study physics at university and to become an astronomer.

The picture is with Nani, a former player of Manchester United. It was with other friends with dystrophy in Guadalajara Jalisco, in 2010. This picture is an example of if you truly want something, there are no limits. 

Greetings from Mexico!

Jag heter Max och ska snart fylla 8 år. Jag bor med min mamma, pappa och vår hund Buzz i Sverige. Det bästa jag vet är att spela spel på min iPad och på mitt Playstation. Just nu spelar jag Guitar Hero och en massa hårdrockslåtar. Min dag börjar vid 7-tiden då jag gör min sjukgymnastik och sedan äter mina mediciner med frukosten. Sedan kör mina föräldrar mig till skolan där jag har en assistent som är med mig hela skoldagen och på fritids. Jag gillar matematik och logik men har svårare för att läsa och skriva. På rasterna leker ha med mina klasskompisar och förflyttar mig med min elrullstol. Mina föräldrar hämtar mig efter skolan och sedan avslutar vi dagen med sjukgymnastik och tar på mina benortoser som jag sover med. Min största dröm är att gå åka på en Disney kryssningsbåt och åka i deras häftiga vattenrutschbana.

I am Max and I will soon turn 8 years old. I live with my mom, dad and our dog Buzz in Sweden. I love to play games on my iPad or on my Playstation. Right now I play the game Guitar Hero and a whole lot of hard rock music. My day starts at around 7 in the morning. My parents do my physiotherapy on me and after that I eat breakfast and take all my medicines. My parents drive me to school where I meet my school assistant who is with me all school day. I like math and logics but I find reading and writing difficult. On breaks I play with my school mates and drive my power wheelchair. My parents pick me up after school and I end the day by my parents doing another set of physiotherapy on me and I put on my orthosis that I sleep in. My biggest dream is to go on a Disney cruise ship and go on their awesome water slide.

My dream is to drive a yellow Chevrolet Camaro like the one in the Transformers movies

Hello, my name is Alexander and I am 14 years old. I live in Geneva, Switzerland. I love to play games on my iPad or my PS4. I’m really good at it and I play with other boys in the world thanks to the internet! If I could change something in the world I would make all diseases disappear, especially mine! My favorite experience was when I could do paragliding in the alps, I had such a sensation of freedom! I will do it again soon at the summer camp! I don’t have a favorite person around me, I love my parents and my brothers, I have three of them! And my best friend is Jacques, whom I know since I was only 2 years old. My day is a success when I can beat my latest record on my game! My dream is to drive a yellow Chevrolet Camaro like the one in the Transformers movies. I love this car, it’s so cool! My father promised me we would have a ride in one this summer! I look forward to it!

Mi nombre es Luis Gerardo Madrigal Negrete. Me gusta que me digan Gera, para mí lo más importante es Dios y tener una relación personal con él, soy cristiano, mi familia y mis amigos también son muy importantes para mí, tengo dos hermanos y una hermana, que se llaman Alejandro, Elizabeth y José. No tengo mascota pero me encantaría tener una. Soy la segunda voz de Los Big Boys, grupo que formamos algunos beneficiarios de ADMO. No me gusta las mentiras ni la gente prepotente, me gusta la música cristiana principalmente aunque escucho de todo un poco. Mi comida favorita son los tacos. Unos de mis sueños es poder ayudar a la gente haciendo trabajo social o algo así, porque sé que hay muchas necesidades y cosas por hacer, y sé que puedo hacer algo para mejorar la situación de comunidad aportando con mi granito de arena siendo autosuficiente.

My name is Luis Gerardo Madrigal Negrete, but please call me Gera. To me, the most important thing is God and to have a close relationship with HIM, I am Christian. My family and friends are also important to me. I have two brothers and a sister, Alejandro, Elizabeth and Jose. I don’t have a pet but I would like to have one. I am the second voice of Big Boys, a band formed by some beneficiaries from Asociación de Distrofia Muscular de Occidente A.C. (ADMO – Mexico). I don’t like lies or arrogant people, I like Christian music mostly but I listen a bit of all. My favorite food is Tacos. One of my dreams is help people doing some social work or something like that, because I know there are tons of needs and so much to do, and know I can do something to improve the situation of my community just contributing with my best efforts, to be independent.

Mi nombre es Pablo David Paredes, tengo 11 años,padesco distrofia muscular de duchenne, vivo con mi mama Silvia, mi papa Christian y mi hermana Stefania. Soy de Cordoba Argentina,en la semana por la mañana voy a rehabilitacion: kinesiologia, hidroterapia, terapia ocupacional y sicologia y a la tarde al colegio,donde ademas de aprender, me divierto mucho con mis compañeros. Me encanta jugar con los videojuegos,escuchar musica y cantar, a veces estoy un poco enojado, porque me cansa levantarme por la mañana para hacer mis terapias, luego se me pasa, porque se que me hace bien. Los finde semana salimos todos juntos a pasear eso me hace muy feliz. Mi sueño es conocer Estados unidos y que salga prontito la cura de esta enfermedad.

Hi – I’m Jonathan Piacentino, I’m 21 years old and live in Rochester, NY. I’m studying Biology to obtain a Bachelor of Science degree.

If I could change something in the world it would to change how humans interact with each other and how they manage the earth’s resources. Humans are highly intelligent beings, and need to fully understand how to interact with each other to preserve the planet while using the planet’s resources to provide for the earth’s very large population. In order to achieve this goal we need to apply our collective knowledge and grow as individuals. We need to apply the best of science and technology to conserve our resources. We need to insure that we have a planet to provide to future generations. To quote Carl Sagan “We were hunters and foragers. The frontier was everywhere. We were bounded only by the earth in the ocean and the sky. The open road still softly calls. By the time we are ready to settle even the nearest of planetary systems, we will have changed. The simple passage of so many generations will have changed us. Necessity will have changed us. We’re an adaptable species. It will not be we who reach other planets and other nearby stars.  It will be a species very much like us, but with more of our strengths and fewer of our weaknesses. For all of our failings, despite our limitations and fallibilities, we humans are capable of greatness.”

My best memory is seeing the Tho Who in Concert at Mohegan Sun Casino during their The Who Hits 50 tour. If I could invite any three to dinner they would be Carl Sagan, Yeshua Bar Yosef, and Ian McKellen.

Sou Bernardo Borges, tenho 20 anos e atualmente, faço faculdade de Jornalismo aqui no Rio de Janeiro. Sonho ter uma sólida carreira nessa área e muita felicidade em tudo que eu for fazer. Além disso, sou jogador de Power Soccer, futebol destinado à pessoas com deficiências físicas severas e que utilizam cadeira de rodas motorizada em seu dia-a-dia. Na modalidade já ganhei diversos títulos, tais como 1º,2º e 3º lugares e duas artilharias em campeonatos brasileiros, 1º lugar e Prêmio de Melhor Jogador na I Copa Powerchair Libertadores e 4º lugar na Copa América pela Seleção Brasileira. Fico muito orgulhoso de fazer parte do Dia Internacional de Conscientização da Duchenne e espero poder servir de exemplo e inspirar diversas pessoas ao redor do mundo a não desistirem de seus sonhos e continuarem lutando, apesar de todas as dificuldades.

My name is Michael Gaglianone. I am 19 years old and I live with my parents in NJ. I don’t have any siblings, but I have a dog named Boomer. I’m currently attending college majoring in Graphic Design but I don’t live there. I have Duchenne Muscular Dystrophy and I was diagnosed when I was 5.

One of my best memories is our trip to the Grand Canyon with my parents. We went with an expedition company. We took a really small plane from Las Vegas to a real ranch. We got to ride horses and shoot skeet. My dad and I took a utility vehicle and my mom and the other people were on ATV’s to the north rim of the Canyon. We slept in a covered wagon. The next day we took a helicopter into the canyon and it landed right next to the Colorado River. We climbed onto these boats called J-rigs to raft down the river for 3 days. We slept on cots under the stars. There were billions of stars and I saw satellites in orbit. That was cool. The guides told us all about the history of the canyon and they cooked all our meals. We even went through rapids. My mom wanted me to sit in the safe area they called the chicken coop. I didn’t want to so my dad put me in front of him. He wrapped his legs around me and told me to hold onto the ropes. It was really fun. I’ll never forget that trip. My funniest memory is when my whole family was in the Outer Banks on vacation. We rented a big house with a pool area in the back. One night we were all sitting outside in the back. My cousin Jonathan went into the house through the sliding screen door. When he came back out, he didn’t see the screen and he walked through it but he thought it was a spider web. He was flailing his arms like a crazy person thinking there was a web on him! I wish we had a video. It was so funny, we still bust on him about that.

If I could invite any 3 people dead or alive to dinner, I would invite Jimmie Johnson to talk him about racing because he’s my favorite Nascar driver. I would invite Derek Jeter because he’s my favorite player. I did meet him but I didn’t get to really talk to him. The 3rd person is General Patton because he’s one of the greatest generals in WWII and I love history. I hope they don’t have to come to the same dinner. That would be kind of weird!

If you could change something in the world, what would you change? I know what the question is asking and I would probably answer what most people answer which is that I want peace and people not to hurt each other. But in my world, I would want health insurance companies to stop denying people the ability to live as close to normal lives as possible. I think people like me should be able to get the newest and greatest technologies available to help them so they can fulfill their life goals just like others can.

Duchenne Muscular Dystrophy is not easy to handle but it isn’t necessarily hindering you to go on a pursuit of happiness. At the age of 41 I married the most beautiful woman in the world. Nici I love you!

Life is wonderful and like a box of chocolates; when the best are taken there’s still the interesting ones.

Georg Niedermeier
Munich, Germany

Meu nome é Júlio Barreto, tenho 27 anos, moro em Salvador, Bahia e fui diagnosticado com Distrofia Muscular de Duchenne aos 4 anos. Me formei em Engen haria Elétrica pela UFBA no início de 2010 com 22 anos, conclui o meu mestrado um ano depois, e hoje em dia faço doutorado também pela UFBA. Nas horas vagas gosto de assistir esportes, principalmente futebol, e sou torcedor do Palmeiras. Também gosto muito de sair para conversar com os amigos, de cinema e de música. Sou bem humorado, tenho muita força de vontade e fé em Deus.