Tag: WDAD 2015

Me gusta reír mucho

Hola! Soy Benjamín Jeremías Reynoso,  tengo 6 años, vivo en la localidad de Funes,  Provincia de Santa Fe,  Argentina, junto a mis padres y hermanos. Tomás (17), Esteban (14), Santiago (12) y Aarón (10) son mis hermanos mayores, Gerardo y Gisela mis padres. Me gusta dibujar, ir a la escuela,  mirar dibujos animados y reír mucho. Mis 3 hermanos más grandes y yo vivimos con DMD, aunque es difícil, no me impide ser niño y ser feliz. Todos nos esforzamos por aprender y buscar alternativas para tener las mismas oportunidades siempre aunque algunas se presenten como desafios. Mi mayor anhelo es que logremos tener una casa propia con las adaptaciones que precisamos y encontrar la cura definitiva de duchenne. Quisiera escribir más pero bueno,  solo tengo 6 años… Me voy a jugar con mis hermanos! Hasta la próxima!

Hi! My name is Benjamin Jeremiah Reynoson and I am 6 years old. I live with my parents and brothers in Funes, province Santa Fe, Argentina.Thomas (17), Esteban (14), Santiago (12) and Aaron (10) are my older brothers, Gerardo and Gisela are my parents. I like drawing, going to school, watching cartoons and laughing a lot. My three older brothers and I live with DMD, although it is difficult, it does not stop me being a child and being happy. We all strive to learn and to seek alternatives to always have the same opportunities although some are presented as challenges. My greatest desire is that we achieve our own house with the adjustments we need and find the ultimate cure for Duchenne. I wanted to write more, but I am only 6 years old… I am going to play with my brothers! Until next time!

Hola soy Erick Roberto voy en segundo grado de primaria, tengo Distrofia Muscular. Nací en el Estado de México, tengo una hermana que se llama Tania de 18 años. Me gusta ver videos en internet, dibujar y escuchar música, me gustan los peluches. Mi sueño es conocer China, quiero ser Chef de grande para cocinar Cup cakes.

A vision to improve the lives of everyone with Duchenne 

My name is Savant Thakur, I live in Melbourne, Victoria, Australia and I was diagnosed with Duchenne Muscular Dystrophy (DMD) when I was 4 years old. Although I lost my ability to walk at the age of 10 and have progressively lost most of my upper limb strength, I have never let this come in the way of achieving my goals in life. In fact, my medical condition has been a great motivation. Since childhood I have been fascinated by the molecular processes that go wrong in DMD and always harboured an ambition to find a cure for DMD by correcting these defects. This desire was reinforced further during my frequent trips to the Royal Children’s Hospital (here in Melbourne) as a young boy, where I experienced first-hand the wonderful work done by world-leading medical specialists, allied health clinicians and medical researchers.

Over the years I have become more and more determined to reach my goal and this one-eyed determination has given me the courage to fight through the adversities and medical complications to excel academically at school and university. In 2013, I graduated from The University of Melbourne with a Bachelor of Biomedicine degree and subsequently completed my honours degree last year (2014) with exceptional grades. Currently I am in the first year of my Ph. D, which I am undertaking at the Basic and Clinical Myology Laboratory, headed by Prof Gordon Lynch (a world renowned muscle expert) at the Department of Physiology, The University of Melbourne. I can proudly say that I am living my dream as a biomedical researcher, performing research to discover novel treatments for muscle wasting disorders that will improve the quality of life for individuals affected by DMD and other related conditions.

Outside the professional medical research sphere, I have a strong passion for promoting awareness of DMD research in the general public, across media circles and funding bodies. My other interests include watching sports – Australian rules football (I am an avid Western Bulldogs supporter) cricket and soccer, viewing science and war documentaries, using social media to comment on scientific issues, reading about latest scientific discoveries and dining out.

My daily routine involves leaving the house at around 10am for university in a Maxi Taxi; a busy day at the lab setting up and conducting experiments alongside my hand-on support Ms Nicki Cranna (research assistant) and spending the remaining time reading journal articles to keep myself up to date with the medical literature; once back at home I jump into bed for a powernap and then study late into the night.

My message for others is:

Strive towards your goals, just push on and never give up. Anyone who has a dream and wants to achieve something can and the disability should be no barrier.

My dream is to run and to play all day with my friends!

Το όνομα μου είναι Ερμής και ζω στην Αθήνα στην Ελλάδα! Το πρωί στις 9.00 πηγαίνω σχολείο με τον μπαμπά μου , μετά πάω στην πισίνα με την κυρια Δέσποινα και κολύμπαμε γυρνώ για μεσημεριανό και μετά πάω στο MDA Hellas και παίζουμε με τον Σταύρο. Το απόγευμα γυρνάω σπίτι με τον αδελφό μου βλέπω λίγο videos τρώμε και μετά με κυνηγάει η μάνα μου να πάω για ύπνο! Μου αρέσει να πηγαίνω με τον αδελφό μου τον Έκτωρα στην παραλία να κάνουμε μπάνιο και να παίζουμε με την άμμο. To παγωτό σοκολάτα. Το όνειρο μου είναι να τρέχω και να παίζω όληηηηη την ημέρα με τους φίλους μου. Όταν έχω την οικογένεια μου κοντά μου το βράδυ. Αν μπορούσα να άλλαζα κάτι στον κόσμο θα ήθελα το σχολείο να τελείωνε νωρίτερα!

My name is Hermes and I leave in Athens, Greece. My typical day starts at 8.00 when I wake up and gο to nursery. Then I meet with Despina and she teaches me how to swim, then I pass from my house to eat something and go with my friend Stavros to MDA to play and do some physical exercises. In the afternoon I come back home where I play with my brother we watch some videos and then my mother chases me to go to bed! I love to go with my brother Hector to the beach and play with the sand and the sea. I love to eat a chocolate ice cream. My dream is to run and to play all day with my friends! My day is a success when in the evening we all get together in bed. If I could change something in the world, Ι would make the school hours less!

Movies are my passion

Mi nombre es Fran Rabal Segura, tengo 24 años y nací en Lorca (Murcia – España) el 1 de febrero de 1991, aunque vivo desde el primer momento en otra localidad cercana, en la costera y muy bonita Águilas, como podéis ver en la foto de la izquierda.

Una de mis mayores pasiones, y de las actividades con las que más disfruto en mi vida, es el cine y las series de televisión, la ciencia ficción y fantasía como género favorito tanto escrita como visualmente, así como el fútbol y el baloncesto; sobre todo si se trata de los equipos de la Región de Murcia: Real Murcia y UCAM Murcia Club Baloncesto, de los que soy un fiel forofo. También me gusta viajar y visitar lugares nuevos, y, como no, hablar o chatear con mis amigos.

Para finalizar, quiero destacar la gran labor que llevamos a cabo entre todos los dirigentes y miembros de Duchenne Parent Projects para luchar contra esta enfermedad. Os pido por favor que colaboréis con nosotros en la medida que os sea posible para que se pueda seguir investigando y pueda un día decirse que es posible detener o curar las distrofias musculares. Toda ayuda es poca!

My name is Fran Segura Rabal, I am 24 years old and was born in Lorca (Murcia – Spain) on February 1, 1991, but from the first moment I live in another town nearby at the seaside, in beautiful Eagles, as you can see on the photo on the left.

One of my greatest passions and activities that I enjoy most in life are watching movies and television series. Science fiction and fantasy are my favorite genres, both written and visual, and I also like football and basketball; especially Real Murcia and UCAM Murcia Basketball Club, of which I am a big fan. I also like to travel and visit new places, and, of course, talking or chatting with my friends.

Finally, I want to highlight the great work that we perform among all leaders and members of Duchenne Parent Projects to fight this disease. I ask you to please help us as much as possible so that further research can be done and maybe one day we can say that it is possible to stop or cure muscular dystrophies. Every bit of help is useful.

When I grow up I’d like to be a car designer

Mi chiamo Daniele, ho 8 anni e faccio la seconda elementare. Ho un fratellino di 2 anni che si chiama Gioele e che amo molto e l’ho aspettato per tanto tempo. Da grande vorrei fare il disegnatore di macchine e mi piace giocare con le automobiline. Per ora, le mie giornate sono piene di cose!! La mattina mi sveglio, faccio colazione e poi mi lavo. Poi mi vesto, a volte chiedo aiuto a mamma o papà. Poi insieme a Gioele usciamo con papà, saliamo in macchina e andiamo prima a portare il fratellino al nido e poi papà mi porta a scuola. Quando esco torniamo subito a casa per pranzare perché verso le 3 arriva Martina che è la mia fisioterapista. Alle 5 vado a scuola di teatro e con altri bambini saliamo sul palco e con la maestra Anna impariamo a recitare. Poi torno a casa, faccio i compiti, gioco un pochino e poi vado a cena. Dopo cena guardo i cartoni animati e poi mi preparo per dormire, indosso le mie scarpine della notte (tutori), leggo una storia con mamma e poi mi addormento. Quando sogno penso che se potessi cambiare qualcosa nel mondo, mi piacerebbe poter riuscire a far diventare buone le persone cattive.

My name is Daniele, I’m 8 and I’m in second grade. I have a 2 years old little brother, whose name is Gioele I love him and I had been waiting for him for a long time. When I grow up I’d like to be a car designer because I really like playing with toy cars! But right now my days are really full of things! At mornings I wake up, I have breakfast and I wash myself. Then I get dressed, sometimes with the help of mom or dad. Then my dad drives Gioele to his nursery school and me to school. When I get out of school, we go straight home to have lunch because Martina, my physical therapist, arrives at 3 p.m. At 5 p.m. I have theatre class: I jump on stage with other children and we learn how to act with my teacher Anna.Then I go back home, I do my homework, I play a little and I have dinner. After dinner, I watch some cartoons, then I get prepared for bed, I wear my orthopedic “night shoes”, I read a story with mom and I get asleep. And when I dream I think that if I could change something in the world I’d like to be able to turn mean people into good people.

My name is Alex Lowe, I am 18 years old and I live in Plantation, Florida. If I could change one thing in the world it would be to “Cure Duchenne”. My best memory is when I graduated from High School last year. My funniest memory is not knowing why I was laughing uncontrollably when I was given morphine for a surgical procedure. The 3 people I would invite to dinner would be Vanessa Rose, Dwayne Wade and Stephen Colbert. My day is a success when I accomplish something new.

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.

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.

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.

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.

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.