Author: worldduchenne

Hej
Jag heter Zebastian, är snart 12 år gammal. Jag har dmd, adhd och dyslexi. Jag bor i Sverige med min mamma, bonuspappa och 7 syskon. Det bästa jag vet är att spela Playstation 3, men sparar ihop till en Playstation 4. Förra året fick jag en knapp på magen. Genom den får jag min mat och mediciner. Jag har nämligen väldigt svårt att svälja. I skolan går jag i en liten grupp. Ibland är jag själv där men vissa lektioner har jag med min stora klass. Jag älskar idrott och matte. Jag har ett stort gäng med personliga assistenter. De hjälper mej dygnet runt. De är mina bästa vänner. Med dem går jag gärna på bio eller till badhuset. Film är jättekul och en av mina drömmar är att se hur man spelar in actionfilmer i USA. På helgerna springer jag gärna och leker med mina syskon. Fotboll är rätt kul eller att leka i sandlådan. Nyligen fick jag en ny elrullstol som jag brukar köra när jag blir väldigt trött i benen. Min allra största dröm är att få åka med hela familjen till Florida, till Disneyland och sen få åka på deras kryssningsbåt. Men först ska jag spara ihop till en ny Playstation 4 så jag kan spela ännu roligare spel.

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My name is Zebastian and I am almost 12 years old. I have DMD (muscular dystrophy), ADHD (attention deficit hyperactivity disorder) and dyslexia. I live in Sweden with my mother, stepfather and 7 brothers and sisters. The best thing I like to do is to play with Playstation 3; but I am also saving towards a Playstation 4. Last year I got a button placed in my stomach. I get all of my food and medicine through it because I have a hard time to swallow. I go in a little group in school and sometimes I receive individual instruction. I also go in a larger class for some of my studies. I like math and physical education. I have a large group of personal care providers that help me 24 hours a day with my needs. They are my best friends. They go with me to movies and the swimming pool. I love movies and one of my dreams is to see how action films are made in the USA. On weekends I run around and play with my brothers and sisters. Soccer (football) is fun or we enjoy playing in the sandbox. Recently I got a new electrical wheelchair which I use when my legs get really tired. My biggest dream is to travel to Florida with my entire family and to go to Disneyland and to take the boat cruise there. But first I will save to buy a Playstation 4 so I can play games that are more fun.

Seth is a 9 year old boy with Duchenne Muscular Dystrophy. He is friendly, loves swimming and can build amazing projects with Legos. Like many boys, he also loves to play ball, any type of ball. Baseball is his favorite and as long as he can walk and play, he will do just that. While he is not as fast running bases and tires easily, he is gives it his best and loves every minute. He asked recently about not being able to walk and inquired what would he do if he could not throw a ball. Fortunately, thanks to the amazing work of PPMD and their vision, I witnessed a robotics demonstration and learned about many ways people are helping kids and adults with Duchenne do things they no longer have the ability to do. After explaining about these innovations, he was excited that his ball playing did not have to end. It would just need to be modified with robotic type devices. He would love a cure for DMD and prays for it nightly for himself and all the people affected by it. He also prayed for a dog for several years. Now he has his dog, Edison, who is his service animal and “brother.” He is pictured here with Edison. While he loses strength each day, he continues to fight DMD and never gives up. His parents are inspired daily by him and his smiles bring joy to their home.

Tell us about yourself.
My favorite color is green and I love to play baseball.

If you could change something in the world what would you change?
No School.

What is your best memory?
The trip to Give Kids the World.
(This was our Make a Wish Trip to Disneyworld. He said it was like paradise.)

What is your funniest memory?
We have tickle fights together as a family.

If you could invite any three people dead or alive to dinner who would that be?
Levi, Logan, and Talan.
(Funny- these are his best friends he has kept since daycare.)

My day is a success when… I have fun.

Subash is a very enthusiastic boy. He simply says his world is his friends. They are everything for him. Well, it was vast for us to comprehend. When we asked him what he means? He aptly put it across saying whatever we comprehend would be right, because his friends are his everything for him. His live, his love, his soul, his heart, his body … everything is his friends. Subash was very keen on mentioning the names of his most beloved friends. He insisted that we make a mention of them, so here we go with the names…. Aravind, Shanmugam, Naveen, Selva vignesh, Madan, Sudhesh, Vijay, Sanjay, Santhosh and many more. They are in the same class in school as Subash and also his neighbors. Each friend of his is so precious to Subash that he has never felt left out at any point of time. He always felt they were there surrounding him and ready to share his activities, his difficulties, his sorrow, or whatever. They cannot even imagine Subash being depressed or lonely, so they take every step to ensure Subash is comfortable at various stages of his life, be it the school or home or outdoor.

Insipte of being immobile, his friends were ready to share the responsibility of taking him to an amusement park where he was really thrilled to see his friends play. They said, even if Subash cannot play, let us not deprive him from being present at an amusement part. Subash recalls this as a very memorable moment. Another amazing moment was his birthday, it was a surprise bday celebration that was organized for Subash in 2014. It was the greatest, most joyful celebration he had ever had in his life time. It brought him tears of joy to see how much his little friends had done to cheer him up on his birthday he added.

There is nothing which has tried without his friends in the vicinity. He is blessed with a wonderful and loving family. Yet he and his mother state that, the importance that he gives his friends to invaluable and they deserve it. There is nothing he has ever enjoyed doing without his friends. They are by his side while studying, at school, at home, at play, when in bed and much more.

The songs are more melodious and the tunes are more vibrant and games are more enthusiastic and interesting when I am in the company of my friends he says. There is no movie, as far as he remembers which he would have watched without his friends. The thrill in watching a movie with his friends is much more than what it is to see it alone.

Subash says hats off to all my loving friends who are everything for me in life. I love my family, but I love my friends much more. I am so fortunate to have such a wonderful bunch of boys with me ever ready to help me in all my tasks. Thank you God is what Subash says.

My son is Luc Percy and he is 5 years old. He turns 6 on 18/09/2015. Luc loves dogs, his best memory is of a pet border collie that we had when he was little. He is a very happy little boy with lots of energy and loves to move around. He is willing to give anything a try and is very helpful. He is very social and is popular at school among his peer group. He is our joker and likes to do crazy things like when he has finished eating he will sit with the bowl on his head.

My younger brother Matt has DMD and is 22-years old with a twin brother who does not have the disease. Matt is a staple in our community in Buffalo, NY USA. He recently won the USA Hockey Disabled Athlete of the Year award and was nationally honored at the USA Hockey congress in Colorado Springs. He continues to shatter all limits as we continue to check items off his bucket list. Our recent fundraiser #MilesforMatty was created in order to send my brother to London, England for the Buffalo Bills game. Matt’s twin, Daniel, just moved there on Monday to begin his one year Masters program. There is so so much more I can share about my brother as well as my whole family. Our mom recently passed away on July 22 and she was an astronomical reason why Matt has been able to live such an amazing life…she would love to see this!

Hola mi nombre es Valentín Chávez, tengo 12 años, soy de Rosario-Santa Fe-Argentina.

Vivo con mi mamá Eliana y su marido Walter que tiene una hija llamada Ileana que tiene 9 años, me llevo muy bien con ella, la quiero como si fuera mi hermana.

Nos enteramos que yo tenía DMD cuando tenía 7 años, desde ese momento nos cambió un poco la vida, ya que tuvimos que ir a muchos médicos y comenzar con todos los tratamientos y estudios de rutina que me cansan y aburren bastante pero los tengo que hacer para poder estar bien.

Lo que más me gusta hacer es estudiar y practicar percusión -¡Me encantaría ser un excelente percusionista!-.Disfruto mucho tocar los instrumentos. Mi abuela Isabel me regalo un instrumento que se llama Kalimba y estoy aprendiendo a tocarlo.

Soy divertido cariñoso y buen amigo, aunque a veces tengo mis momentos de mal humor, jajaja. Tengo tres mejores amigo s que se llaman Facundo, Juan y Fabricio, junto a ellos curso el último año de la primaria en la escuela “Fuente de Vida”. Estoy esperando ansiosamente que llegue octubre porque tenemos nuestro viaje de egresados a Mendoza.

Además tengo cuatro gatos y una perra. A veces duermo con mis gatos, en realidad toda mi familia duerme con los gatos.

Me gusta mucho jugar con la Play, y compartir con mis amigos los juegos. También me encanta leer libros sobre animales, comics de superhéroes y villanos; y disfruto mucho haciendo dibujos.

Y por último les voy a contar la mejor noticia… Estoy muy feliz porque voy a tener un/a hermanito/a a quien voy a cuidar y mimar mucho!!

Hola, mi nombre es Elias Alejandro Carbajal, tengo 14 años, me dicen Ale. Vivo en Olavarría provincia de Buenos Aires Argentina. Voy a la escuela secundaria, estoy en 3 año. Mi familia está compuesta por mi mamá Verónica, mi papá Pablo y mis dos hermanas Lourdes y Fátima. Me gusta mucho cocinar y tomo clases de cocina.
Un día mío es: Tratamiento de kinesio, T.O.,Hidroterapia y psicología temprano por la mañana, escuela más tarde y por las tardes hay veces que voy a mis clases de cocina y otros día juego a la Play  o con la compu en casa. Los fines de semana me gusta ir al cine. Todavía no tengo decidido que voy a seguir estudiando.
Hace un año que estoy en silla de ruedas y extraño mucho salir a caminar. Gracias a mi familia y amigos que me cuidan y ayudan mucho. Me encanta viajar y conocer nuevos lugares. Me despido saludándolos a todos, deseándole mucha suerte y dándoles un fuerte abrazo. Ale

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Hello, my name is Elias Alejandro Carbajal, I am 14 years old, people call me Ale. I live in Olavarria, the province of Buenos Aires, Argentina. I go to high school, I am in 3^rdgrade. My family is my mother Veronica, my dad Pablo and my two sisters Lourdes and Fátima. I really enjoy cooking and taking cooking classes. This is how my day looks like: I start with kinesiology, T.O., hydrotherapy and psychology in the early morning, after that I go to school and sometimes in the evenings I go to my cooking classes. On other days I play with my play station or at the computer at home. On weekends I like to go to the movies. I have not yet decided what I would like to study. Since last year I’m in a wheelchair and I really miss going for a walk. Thanks to my family and friends who take really good care of me and help me a lot. I love to travel and to visit new places. Greeting to all, wishing everybody good luck and I would like to say goodbye to you with a big hug. Ale

Hola, mi nombre es Javier Alberto Olívola, tengo 26 años vivo en Pilar gran Bs As. Tengo 2 hermanos con DMD también. Soy un chico amable, divertido y romántico.

Soy sincero y me gusta que la gente que me rodea siempre este feliz, ya que por más duro que sea todo siempre es bueno sonreír.

Me considero una persona llena de sueños, así que sería interminable la lista de los mismos si procediera a enunciarlos, algunos como insertarme laboralmente ya que todos tenemos ese anhelo de poder independizarnos y tratar de llevar una vida tranquila, concretar sueños sentimentales ya que me encuentro de novio y tanto ella como yo tenemos ganas de formar una familia. Como así también poder movilizarme tranquilamente por la ciudad (cuesta ya que no hay mucha accesibilidad).

Me gusta cantar ya que es una de las maneras por las cuales me distiendo de mi rutina diaria, a mis 2 hermanos (Nicolás y Tomas) también les gusta. El futbol, es una de mis pasiones soy de River Plate.

Los fines de semana, son variados ya que a veces mi papa nos lleva en su camioneta en familia a la Iglesia a la cual nos congregamos hace tiempo, o salimos con mi novia. O sino solo nos quedamos todos en casa a ver una peli o compartir un juego de mesa.

Si pudiera cambiar algo en el mundo eliminaría los prejuicios… o aumentaría la información que se brinda a las personas no solo de la DMD, sino de todas las enfermedades, ya que hay mucha desinformación y muchas veces el hecho de ver nuestra situación hace que las personas que se creen “normales” nos aparten o nos crean incapaces de “hacer algo o formar algo”

Invitaría a cenar a mis papas que lucharon por darme lo mejor, me llenaron de esperanzas para luchar por mis sueños siempre esperando la bendición de Dios, a mis hermanos Nicolás y Tomas que los amo con todo mi corazón aunque a veces los haga renegar siempre están para apoyarme. Y a mi novia que es la que me llena de amor a diario y me alienta a que no me rinda y luche por mis proyectos es mi compañera siempre.

Mi mejor recuerdo es cuando tenía 11 años y aun podía caminar, andaba en bicicleta con vecinos, era una mezcla de emociones ya que siempre me gusto el hecho de realizar actividades, los juegos con mis primos que era una explosión de adrenalina.

Mi día comienza cuando mis padres me acomodan a la mañana antes de irse a trabajar luego llega el acompañante terapéutico, me levanta procedo a lavarme los dientes, desayuno con mi novia. Pensamos que cocinar, a veces salmos a hacer compras y luego a la tarde esperamos que llegue nuestro kinesiólogo.

Mi persona favorita a mí alrededor es mi novia, ya que me apoya y alienta a que busque una manera de hacer cada día especial.

Mi día es un éxito cuando logro o veo un avance es mis proyectos ya que es un impulso para seguir adelante.

Loris ist sehr unternehmenslustig, er liebt es auf Spielplätzen zu klettern, ins Schwimmbad zu gehen und dabei ins Wasser zu springen. Wenn er der Mama beim Kochen helfen kann ist er glücklich.

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Loris is very adventurous, he likes to climb on playgrounds, to go to the swimming pool and to jump into the water. He is very happy when he can help his mom cooking.

This is my son Matthew Denger and his close friend Beth. I chose this photo because it accurately captures my son the way he lived. Matthew was attending university, studying Political Science and always with friends. My son passed away in February 2013, yet his spirit lives in those who knew him well.
Duchenne muscular dystrophy is a cruel disorder robbing a person of physical ability and independence.  My son stopped walking at age 8, needed surgeries by age 13 to correct the deformities in his feet and back stemming from muscle weakness and slept with mechanical breathing support starting at age 16. Like many of his affected peers, Matthew didn’t allow Duchenne muscular dystrophy to end his goals and dreams. In spite of his physical condition, he attended college full time and was an Orientation Leader and part of the team that welcomed and helped new students at the university. Matthew volunteered in the local office of our US Senator, sang in a community chorus and enjoyed being with his friends.

My family misses Matthew dearly and always think of him with fondness. We sometimes wonder what he would have been like if he didn’t have muscular dystrophy and realize he probably wouldn’t have been different than he was. He lived a life of no regrets and always looked to the future.

On World Duchenne muscular dystrophy Awareness Day I share a bit of his story to encourage those who live with this disorder to set high goals and to pursue their dreams. I also write hoping others will learn about the condition and consider getting involved by helping to fund research to improve survival and the quality of life for those living with Duchenne muscular dystrophy.

Today and every day I remember Matthew. On this day I share his story to help others know him and help those like him.

Peace

Brian Denger