Tag: Archive

El es Santiago Blussand, tiene 14 años y vive en San Francisco, provincia de Córdoba, Argentina; con su mamá Graciela, papá Carlos y sus hermanas Carla y Camila. Como Santi tiene además de la distrofia muscular de Duchenne, epilepsia y una hemiparecia derecha que le afecto el habla, yo, su mamá les voy a contar como es él. Es una personita muy dulce, siempre con una sonrisa pesar de tener malos días. Va a una escuela especial llamada APADIM en donde Santi encontró su lugar en el mundo y la pasa muy bien. Su seño Fany se encarga de hacer que se divierta mucho junto a sus compañeros. Es el mimado de la escuela, sus compañeros se encargan de integrarlo a cada juego que realizan y hasta corren carreritas con las sillas de ruedas. Disfruta mucho estar al aire libre y ama los caballos; Tiene una amiga inseparable, su perra Luli, que es como su ángel guardián. Le gusta mucho dar vueltas en auto, escuchar música, mirar tele y comer asados en familia. Su kinesiólogo viene 3 veces por semana a casa a realizarle sus ejercicios que no le gustan mucho. Cuando sus hermanas están en casa con sus amigas él siempre esta en el medio, no se pierde nada, es muy sociable y muy querible. En síntesis, así es Santi, una personita que nos enseño a tener fuerzas en los momentos más difíciles. Nuestro deseo es que algún día se encuentre la cura de esta enfermedad. Tratamos de que sea feliz y lo disfrutamos todo lo que podemos.

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This is Santiago Blussand, he is 14 years old and lives in San Francisco, Córdoba, Argentina, with his mom Graciela, his dad Carlos and his sisters Carla and Camila. As Santi has Duchenne muscular dystrophy, epilepsy and a right hemiparesis which caused speech impairment, I, his mother, will tell you how he is like. Santi is a very sweet little person, and despite having bad days, he has always a smile on his face. Santi goes to a special school called APADIM where he feels comfortable and he is having a great time. His teacher, Fany, makes sure that he has much fun with the other kids. He is the sweetheart of the school, he is very involved in all games and they even do races with wheelchairs. Santi enjoys being outside and he loves horses. Luli, his dog, is his inseparable friend, he is like a guardian angel. Santi loves riding around in the car, listening to music, watching tv and barbecuing with the family. His physiotherapist comes three times a week home to do exercises which he does not like very much. He is always around when his sisters and friends are at home. Santi is very social and loved. He taught us to be strong in even the most difficult moments. Our wish is that one day this disease will be cured. We want him to be happy and we enjoy the most we can.

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.

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.

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.

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

Mi nombre es Juan José Villalvazo Rojas, me gusta que me digan “JuanJo”. Soy muy alegre, me gusta hacer fiestas con mis amigos y divertirme con ellos, también me gusta decir lo que pienso o siento aunque eso muchas veces no lesguste a las demás personas. Mi familia está integrada por papá, mamá, mi abuela y mi hermano menor Arturito, con él peleomucho pero nos queremos y escuchamos. Mi mamá es muy buena conmigo, aunque también peleamos constantemente pero creo que es porque somos muy iguales jejeje!! Mi papá es de gran apoyo para mi, me gusta platicar con él, es muy paciente y buena persona, al igual que mi abuela. Mis amigos también son muy importantes para mi, son como mi segunda familia.Me gusta la música de “metal”, mi grupo favorito es Epica. Soy corista de los Big Boy ́s grupo que formamos chicos con laenfermedad de distrofia muscular. Los videojuegos me encantan, también las películas de Harry Potter y el programa de Dragon Ball Z. Me gusta el deporte, sobre todo el futbol, también me gusta ver ánime. Mi comida favorita es chorizo con papas.Mi sueño, es conocer la ciudad de Manchester.

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My name is Juan Jose Villalvazo Rojas and they call me “JuanJo”. I am easy going and I like toorganize parties with my friends and have fun with them. I say what I think or feel although manytimes people do not like it at all. My family is Dad, Mom, Granny and my younger brother, Lil’ Arthur, we fight a lot but we love andlisten each other. My Mom is so kind with me although we also fight constantly but I think it is because we are sosimilar, LOL; my Dad it is a great support to me, we talk a lot, he is so patient and good person like my Granny is.I consider my friends are so important to me; they are my second family. I like Music, Heavy Metal the genre and my favorite bandis Epica. I am part of “Big Boys”, a band integrated by boys with muscular dystrophy disease. I love videogames, Harry Potter ́s movies and Dragon BallZ. I like sports, especially Soccer. I also like Anime. My favorite dish is sausage with potatoes. My dream, visit the city of Manchester.

No passer by can miss to smile back at Vignesh who is a very cheerful boy. He goes to school and is in his 9^th grade now. Vignesh visits the rehab centre every week and says he loves to miss school and be with us for a change. He feels being with us is a very positive moment and it energizes him a lot during the rehab sessions. Amidst all this, Vignesh has his own ways of pass time where he feels really elated. He shared one of his family outings with us. It was to a hilltop family deity temple which he cherished. The drive on the winding roads, the loverly sceneries and the company of his family was so amazing that he cannot forget it he says. It is not because of the beauty of the hill top temple alone, but visiting the temple gives him a sense of joy he added. Especially a trip filled with fun activities and his little brother who kept entertaining him all the way made it even more interesting. Well, he can’t keep travelling always, he has his own ways of entertainment. Carrom and chess keeps him occupied and is most sought after he stated. He said he would love to grow up into a mechanical engineer and invent lot of mechanical items which will be pollution free and not consuming electricity much. His intention is to enter college first and then come out with flying colours as an engineering graduate. He reads a lot and loves to solve puzzles. He says his room is full of books and most of them would focus on puzzles and games. Vignesh has a very positive attitude towards life. He tries his hands on cooking too at times. He loves to be on it for long hours serving his family with delicious items made of mushroom as he loves cooking on mushrooms. Vignesh has invited the rehab centre team home to taste his culinary expertise. Looking forward to meet him at his home.

Somos Marcos de 8 años y Jesús de 6. Somos de Sevilla, y estamos afectados por la Distrofia Muscular Duchenne.

Marcos: Lo que más me gusta es jugar en el parque con mi hermano y los amigos, me encanta el universo, los dinosaurios, la geografía y anatomía. De mayor quiero ser Pediatra. Mi afición es el piano, por lo cuál también estudio música además del colegio.

Jesús: Me encanta ver los dibujitos de Peppa Pig, jugar con mis amigos, dibujar y colorear, jugar con mis coches, ir a la piscina a nadar y sobre todo jugar con mi hermano y mis papas.

En el fin de semana nos gusta ir al cine, conocer sitios nuevos, ir al campo, montar en bici, jugar a la Wii, ver los dibujitos animados, ver a mis abuelos, ir a la playa y cualquier otra cosa que surja y sea divertido. Durante la semana vamos a Fisioterapia, hidroterapia y Logopeda, lo que más nos gusta es la hidroterapia porque el agua nos encanta. Nuestro deseo es que todos los niños sean felices y no haya guerras en el mundo.

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We are Marcos (8 years old) and Jesús (6 years old). We are from Sevilla, and we are affected by Duchenne muscular dystrophy.

Marcos: I like to play in the park with my brother and friends. I love the universe, dinosaurs, geography and anatomy. Later I want to be a pediatrician. My hobby is to play piano; besides going to school I also study music.

Jésus: I love watching Peppa Pig cartoons, playing with my friends, drawing and coloring, playing with my car, going to the swimming pool and playing with my brother and my parents. 

On the weekend we like to go to the movies, to the country side, and the beach. We also like to play with the Wii and to visit our grandparents. During the week we go to physiotherapy, hydrotherapy and the speech therapist. Hydrotherapy is what we like most, because we love water. Our wish is that all children are happy and that there would be no war.

I am taking all the way it comes – I can’t change it anyway

Hallo ich bin der Mattia, bin 17 Jahre und wohne in der Schweiz in Münchenstein (Kanton Baselland). Ich bin glücklich, dass ich in der Zeit geboren wurde, wo die Hilfsmitteltechnik ausgereift ist und ich damit relativ selbständig sein kann. Ich habe einen schnellen Rollstuhl mit dem ich täglich in die Schule fahren kann. So bin ich bei jedem Wetter unterwegs und stärke meine Gesundheit.
Mit meinem Telefon kann ich Voicemails schicken und brauche damit nicht schreiben- das erleichtert mir die Kommunikation mit meinen Freunden. Den Lift kann ich über eine Fernsteuerung bedienen, zum Telefonieren benutze ich mein Headset.
Mit all dem fühle ich mich sehr wohl. Ich liebe die Basler Fasnacht und bin als eigene Fasnachtslarve unterwegs. Da bin ich der Duchenne-Waggis und keiner kennt mich und keiner sieht auf den ersten Blick, dass da ein Behinderter drunter ist. Das ist echt cool! Würde ich für jedes gemachte Foto 5 Franken bekommen, hätte ich viel Geld verdient. Meine Freunde haben mir eine Facebookseite gestaltet und so können alles Fasnachtsbegeisterten den Duchenne-Waggis an der Basler Fasnacht begleiten. Meine zweite Leidenschaft ist E-hockey. Wenn ich ein tolles E-Hockey Training mit meinen Teamkollegen hatte und fertig nach hause komme, dann bin ich mega zufrieden. Wir trainieren seit fast 2 Jahren zusammen und konnten schon an zwei Turnieren teilnehmen. Am E-Hockey fasziniert mich, dass ich mit meinem Sportrollstuhl ganz wendig bin, und schnell reagieren kann, und alle gleich stark sind. Das Training ist sehr anstrengend, aber mein Ziel ist, in der schweizer Nationalmannschaft zu spielen. Manchmal ist es schon schwierig im Rollstuhl zu sitzen und nicht alles so zu können wie mein Bruder, aber ich habe mich daran gewöhnt und
nehme alles wie es kommt- ändern kann ich es sowieso nicht.

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Hello I am Mattia, I am 17 years old and I am living in Switzerland in Münchenstein (Area Basel Land). I am happy that I was born in a time when aid technology is quite well and so I move and organize myselfe quite independent. I have a quick wheelchair with which I can drive to school every day. So I am on the road with any type of weather and this does strengthen my health. With my phone I can send voicemails and therefore it’s not necessary to write text messages –so this is the easiest way for me to communicate with my friends. For using the elevator I use a remote control, to make phone calls I’m using my headset. With all this, I feel very comfortable. I love the Basel Fasnacht and I take part with my own “mask”. I am the “Duchenne Waggis” and nobody knows me and no one sees at first glance that there is a disabled person underneath. That’s really cool! Would I have asked 5 francs for each picture taken, I would now have a lot of money. My friends did made a Facebook page for this and so every carnival enthusiast can accompany Duchenne Waggis at the Basler Fasnacht. My second passion is E-hockey, electric wheelchair hockey. When I have had a great e-hockey training with my teammates and got home, I’m really happy. We train together for almost 2 years and have been able to take part in two tournaments. E-hockey fascinates me, I am very agile with my sports wheelchair, I can respond quickly, and everyone is equally strong. The training is very stressful, but my goal is to play in the Swiss national team. Sometimes it’s difficult to sit in a wheelchair and not beeing able to do anything what I would like to do, like my brother, but I got used to it. I am taking all the way it comes – I can’t change it anyway.

Hola soy Jesús Mojardin Agabo , tengo 12 años , Vivo en el Estado de México, tengo 2 hermanos, uno mas grande y el otro mas pequeño que yo, soy el de en medio. Actualmente ya no puedo caminar , voy en segundo año de secundaria. Me gusta jugar mucho con mi primo yo en la silla y el de pie , jugamos futbool y me divierto mucho. Me gusta jugar con coches , ir al cine , ver películas jugar con la tablet . Quiero comprarme un Xbox y tener un PSP para jugar con mi primo en su casa . Quiero curarme de mis pies y que pueda ser corredor de autos.