Hola, soy Khalil Profiti de la ciudad de Mar del Plata, Argentina. Tengo 15 años,voy a 4° año de la escuela secundaria,vivo con mis padres y mi hermano Etienne que también es portador de Distrofia Muscular de Duchenne como yo.
Me apasionan los coches, voy a todas las expo que puedo, leo sobre modelos nuevos y me encantan los clásicos. Colecciono junto a mi papá y mi hermano autos a escala,tengo una colección de mas de 400 autos en diferentes escalas,modelos y marcas.
Soy hincha de Boca y miro todos los partidos .
Hace 10 años que me atiendo por mi patología con la dra. Llilia Mesa y el Lic. José Corderí en la Fundación Favaloro en la ciudad de Buenos Aires,viajo para atenderme junto a mi familia 4 veces por año,y aca en Mar del Plata hago kinesiología 2 veces por semana y ejercicios también en mi casa con mi mamá y mi papá. Junto a mi familia nos encanta participar en todos los eventos que realiza ADM Argentina en la ciudad de Buenos Aires como charlas, Mostrarte,caminatas,etc.
Disfruto de mi ciudad todo el año y sobre todo en el verano en la playa!
Me gusta viajar, pasear, jugar a la Play,ir al cine,ir a la playa,estar con amigos,con mis primos y toda mi familia.
Saludos para todos desde Mar del Plata!!!
Story by Omar Kamal
أنا إسمي عمر، من مصر
إمبارح كنت بلعب مع أختي لينا
وبكرة هنروح الشاطيء ونلعب مع حمزه ورحمه اصحابي
نفسي أجري وانط فوق وألمس السحاااااب
My name is Omar, from Egypt. Yesterday I was playing with my sister Lina and tomorrow I will go to the beach with my friends Hamza and Rahma. I hope to RUN, JUMP and TOUCH the sky!
Story by Michele Sanguine
Mi piace infatti recitare e fare imitazioni
Mi chiamo Michele Sanguine, ho 30 anni e vivo a Gallarate (Varese). Ho studiato Giurisprudenza e mi sono dedicato, nel periodo universitario, ad attività extra didattiche tra cui il teatro e programmi radiofonici. Mi piace stare all’aria aperta ed ascoltare musica. Sono una persona molto positiva e solare, ma a volte un po’ permalosa. Da piccolo speravo di diventare animatore turistico, mi piace infatti recitare e fare imitazioni.
Ora il mio sogno, per quanto impossibile, è creare una famiglia.
Ogni giorno mi sveglio alle 11 circa, mi preparano e, circa un’ora dopo bevo il mio solito latte e Nesquik. Aspettiamo che mi sorella torni da scuola per pranzare. Dopodichè mi riposo per circa 15 minuti e, sto al pc oppure al sole in giardino. Nel tardo pomeriggio esco con mia madre e spesso andiamo in giro per negozi di elettronica. Ceno e torno ad ascoltare musica.
Se potessi eliminare qualcosa dal mondo sarebbero l’odio, la violenza gratuita e il vandalismo mentre mi piacerebbe vivere in un mondo in cui non ci si sofferma all’apparenza delle cose e delle persone.
Il ricordo più bello che possiedo è l’evento Grand Prix Duchenne. Mi ha stupito la grande partecipazione (pensavamo di fare una gara tra qualche amico, ma in realtà più spiegavo quale fosse la mia idea più è stata supportata da amici e conoscenti). La gente si è affezionata a me ed è stato bello poter contare sull’aiuto dei veri amici, coloro che farebbero di tutto per aiutarti.
Il mio ricordo più divertente è una vacanza in un villaggio turistico dove ho partecipato ad uno spettacolo con mio padre che ora non c’è più. Io centavo una canzone imitando Louis Armstrong mentre mio padre raccontava una barzelletta.
Se potessi invitare a cena tre persone, anche non più in vita, sarebbero :
– Papa Francesco, perché adoro imitarlo
– Il signor Duchenne
– Elvis Presley, perché è da sempre uno dei miei cantanti preferiti sia per la bellezza delle sue canzoni, sia per il suo lato da latin lover
My name is Michele Sanguine, I am 30 and I live in Gallarate (close to the Milan area). I studied Law and, as a student, I spent a lot of time in activities such as a theater group and a collaboration with radio programs. I love being outdoors and listening to music. I’m a very positive and cheerful person, but I’m also a bit touchy sometimes. When I was a kid, I wanted to become a tourist resort entertainer, because I love acting and doing impersonations of celebrities. Now, my biggest wish is to create a family, although it is impossible.
Every day I wake up at 11h., I get prepared and, more or less an hour later, I drink my favourite milk and chocolate. We wait for my sister coming back from class, then we have lunch together. Then I have a 15 minutes nap and I browse the web or sunbathe in the garden. In the late afternoon I go out with my mother, and we often hang out in electronics shops. Then I have dinner and listen to some music.
If I could remove something from the world it will be gratuitous violence and vandalism, then I would like to live in a world where people look beyond appearances.
My best memory is the Grand Prix Duchenne event – an electric wheelchair race I organized recently, involving a group of Duchenne boys, on a big kart circuit. I was amazed by the great response we received, in terms of participants. At the beginning we had imagined we would be able to engage a few friends, but soon my idea captured the interest of friends and acquaintances, who started to support it. A lot of people grew fond of me. My greatest pleasure, though, was to know I could rely on my close friends, the ones who would do anything to help me.
My funniest memory took place during a holiday in a touristic resort where I joined a comic show with my father, who is not here anymore. I sang a song reproducing Louis Armstrong’s voice while my father told some jokes.
If you could invite any three people dead or alive to dinner would be:
– Papa Francesco, because I love impersonating him.
– Duchenne, because he discovered the disease.
– Elvis Presley, because he is my fauvorite singer and… because I could learn something from his “latin lover” experience.
Story by Kenny Broad
My name is Kenny Broad. I am 52 years old, and I live in Brisbane, Queensland, Australia… big Broncos an Bulls supporter and I have Duchenne muscular dystrophy.
Whatever life throws at me, I smile (not always easy) and just get on with it
Focus on things you can do… not what you can’t…
Story by Joe & Ben
Joe (age 9) and Ben (age 9) – from Minnesota in the United States. Both fighting Duchenne Muscular Dystrophy
Story by Roberto Pinillos Sedas
Hola a todos. Soy mamá de Roberto. Él está en tratamiento por distrofia muscular de Duchenne. Tiene 4 años y hasta ahorita el camina y juega muy feliz, pero sí he notado que necesita mucha ayuda para hacer esas cosas. Me da tristeza pensar que pueda llegar el día en que no pueda caminar por si solo, pero también tengo la esperanza de que así como existen nuevas enfermedades, también hay médicos y personas que puedan ayudar a encontrar un buen tratamiento que ayude a mi hijo y a todos los que padecen esta enfermedad a llevar una vida feliz como todos queremos.
Story by Julián Gago
Me gustan mucho los animales del fondo del mar
Hola, soy Julián, tengo 4 años y el 1 de julio cumplo 5 años. Soy de la ciudad de 9 de Julio Pcia de Buenos Aires, Argentina. Vivo con mamá Mariana, papá Marcelo y mi hermanita Sara. Todos los días a la mañana voy al jardin de Infantes, allí me encuentro con mis compañeritos y mis seños, para jugar, aprender y divertirme. Por la tarde algunos dias voy a la kinesióloga y otros días a la fonoudióloga. Me gusta ir a la casa de mis abuelos a mirar películas animadas y que mi abuelo me arme castillos con los ladrillitos. Los fines de semana comparto juegos con mi hermanita, bailamos y nos abrazamos. Por la tarde salimos a pasear en familia. Mi color favorito es el naranja. Me gustan mucho los animales, sobre todo los del fondo del mar. También disfruto mucho cuando me leen cuentos.
Hi, I’m Julian, I am four years old and I will be turning 5 on July 1st. I’m from the city July 9, the province of Buenos Aires, Argentina. I live with my mom Mariana, my dad Marcelo and my little sister Sara. Every morning I go to the kindergarden, where I meet my classmates, to play, to learn and to have fun. In the afternoon I go to the physiotherapist and on other days to the speech therapist. I like to go to my grandparents’ house to watch nice movies and with to build castles out of bricks with my grandfather. In the weekend I play games with my sister, we dance and hug. In the afternoon we often go for a walk with the family. My favorite color is orange. I love animals, especially the ones that live on the bottom of the sea. I also enjoy when they read me stories.
Story by Franco Iannone
A veces sueño con tener un hermano o hermana para cuidar
Me llamo Franco Iannone. Tengo 10 años y cumplo 11 años el 8 de Julio.
Yo vivo en una casa con mi mamá Fernanda y mi papá Juan Pablo en El Palomar, Provincia de Buenos Aires, Argentina.
Todos los días voy al colegio, curso el 5º año de la escuela primaria. Comparto muchas actividades con mis compañeros que son muy buenos.
En los recreos juego en el patio del colegio, trato de no correr para no caerme pero a veces me llevan por delante sin darse cuenta. Por suerte nunca pasó nada gracias a mis amigos y las maestras que cuidan. Algunos días, después de la escuela, voy a natación para aprender a nadar bien y pasar un rato en el agua. Otros días viene la kinesióloga a casa para hacer los ejercicios que me ayudan a estar mejor. Los fines de semana me gusta ir a pasear. Jugar con mis primos o ir a la casa de un amigo. También nos juntamos con toda mi familia para festejar. Los sábados a la noche muchas veces comemos pizza que hace mi tío Pablo. Otras veces comemos fideos con tuco en la casa de mis abuelos Bartolomé y Alcira. Otros días, como los domingos al mediodía, me gusta disfrutar de los ñoquis que hace mi abuela Elsa. Me gusta dibujar e inventar historias y personajes con mis juguetes y muñecos. Me gusta mucho escuchar música en especial la canción “Happy” de Pharrell Williams porque me hace sentir feliz y puedo bailar. También estoy mucho tiempo jugando a la play station y a juegos en la computadora porque puedo compartirlo con mis amigos. En las vacaciones me gusta ir a la playa, en especial a San Clemente del Tuyú, para andar en camioneta 4×4 al costado del mar con toda la familia y pescar con mi papá. También me gustan las Sierras de Córdoba donde pasamos las vacaciones con amigos entre montañas y lagos.
A veces sueño con tener un hermano o hermana para cuidar, espero que algún día pueda cumplir mi sueño. Mientras tanto juego con mis primos y mis primas y me divierto mucho.
My name is Franco Iannone. I am 10 years old and I will turn 11 on July 8th.
I live with my mom Fernanda and dad Juan Pablo in El Palomar, Buenos Aires, Argentina.
I go to school every day, I am in the 5th year of primary school. I do a lot of things with my friends from school who are really nice. During the breaks I play in the schoolyard, I try not to run to avoid falling, but sometimes it happens that I get knocked down accidently. Luckily nothing ever happened thanks to my friends and teachers who take good care of me.
Sometimes after school, I got to the swimming pool to take swimming lessons, and to have fun in the water. On other days the physiotherapist visits me at home, and I do exercises that help me to feel better. On weekends I like to go for a walk, to play with my cousins or to go to a friend’s house. We also get together with my whole family to party. Very often on Saturday evening we eat pizza made by my uncle Pablo. Sometimes we eat noodles with tomato sauce at my grandparents Bartholome and Alcira´s house. And on Sundays I usually enjoy the gnocchi that makes my grandmother Elsa. I like drawing and inventing stories wth my toys and action figures. I love listening to music and especially the song “Happy” by Pharrell Williams, because it makes me happy and I can dance. I spend much time playing with the play station and other computer games because I can play together with my friends. In holidays I like going to the beach, and especially to San Clemente del Tuyú, to ride in a 4×4 along the seaside with the complete family and to fish with my dad. I also like the Sierras de Cordoba where we spend the holidays with friends in the middle of mountains and lakes.
Sometimes I dream of having a brother or sister to take care of, I hope that one day my dream will come true. Meanwhile I play with my cousins which I enjoy a lot.
Story by Pedro Italo Cavallari Ribeiro
Esse é Pedro Italo Cavallari Riberio, portador de DMD com 15 anos de idade.
Compartilhando ai com voces que pra quem ama nao existe limite para sonhar e esse garoto ai pode até ter distrofia mas é um grande menino e muito feliz e nós fazemos parte dessa luta. Somos de Sao Paulo Brasil.
Story by Patrick Denger
My name is Patrick and I am 21 years old. I am attending the University of New England as an Animal Behavior major as a commuter and am currently a junior. I have a sister named Rachel and a cat named Smokey. I had a brother who passed a way from heart failure due to Duchenne. I was diagnosed with Duchenne at the age of 5. I am involved in quite a few things through school and outside of school. I am part of the local community chorus and we meet once a week to prepare for two yearly concerts. One in the spring and one in the winter. I am also an Orientation Leader, so I help new students prepare for college during the new student Orientation. Its super rewarding because I get to help so many people through it as well as make new connections with people. I have my license and a van that has a bunch of adaptations that allow me to drive it independently. I am an extremely positive person and I love life. I love to participate in events at my university and spend time with all my friends. I think it is important to live life the way you want to regardless of having a disability. If you have something you always wanted to do, go for it because you may never get a second chance for some things.