Category: Duchenne Stories

Mi chiamo Jacopo, ho dodici anni, a settembre vado in II^ media, abito a Cordenons (Pn). Il mio sogno sarebbe quello di correre in motocross e diventare un Campione perché sono stra appassionato di questo sport, mi emoziona e mi esalta. Il 14 giugno, con la mamma e il papà siamo andati a Maggiora per vedere il Campionato Mondiale di motocross e tifare Toni Cairoli, è stato bellissimo, ho urlato come un pazzo.

Nel tempo libero mi piace fare passeggiate con la mamma così possiamo chiacchierare tanto e giocare con i videogiochi sportivi perché è come se io fossi dentro al gioco.

Se potessi cambiare qualcosa nel mondo vorrei fare in modo che nessun bambino nascesse con le malattie come la mia, che tutti i bambini potessero camminare, correre, parlare e toglierei anche la cattiveria e la violenza, eliminerei anche i ladri perché ho paura e non mi piace stare a casa da solo per colpa di questa gente malvagia.

Il mio ricordo più divertente è stato quando ero a Modena con la squadra di hockey. I genitori sono andati a visitare la città e noi ragazzi con la scusa che avevamo paura di scaricare le carrozzine e al pomeriggio avevamo la partita, li abbiamo convinti a lasciarci in albergo da soli e noi matti abbiamo iniziato a giocare a nascondino e ad andare su e giù con gli ascensori, abbiamo riso tantissimo e ovviamente scaricato le carrozzine.

My name is Jacopo, I’m 12 and I’m starting 7th grade in september. I live in Cordenons (North-eastern Italy).

My dream is riding a motocross and becoming a champion; I’m really a huge fan of this sport, it excites me and touches me a lot. On June 14, I went to Maggiora with my mom and dad to watch the World Motocross Championship and to support Toni Cairoli. It was amazing, I cheered like crazy.

In my free time I like having walks with my mom because we can chat a lot and I like playing sports videogames because it feels like I’m inside the game.

If I could change something in the world, I’d make it impossible for any kid to have a disease like mine. I’d make it possible for every child to be able to walk, run and to talk. I’d also erase wickedness and violence, and I’d also eliminate the existence of thieves, because I’m scared being home alone because of bad people.

One of my funniest memories is about my stay in Modena with the wheelchair hokey team. Our parents went to visit the town and we convinced them to leave us alone in the hotel, with the excuse of not wanting our wheelchairs to run out of power before of the game in the afternoon. We had a lot of fun: we played hide and seek, we travelled up and down in the lifts, we laughed a lot…and our wheelchairs ran out of battery, of course.

fMy name Ramón Freitas, I’m 24 years old and I live in Rio de Janeiro, Brazil. I am a huge soccer fan,  Flamengo is my favorite team. Years ago I was the first Power Soccer athlete in South America, now I play at “Novo Ser Power Soccer” team. This June I lived one of the best moments of my life playing the Libertadores Cup final game in Montevideo where we won first place.

Olá. Eu sou o Raimundo. Tenho 15 anos e tenho uma Distrofia Muscular de Duchenne. Vivo em Portugal, no Porto, com a minha principal cuidadora, a minha mãe. Frequento a Escola Secundária Aurélia de Sousa. Tenho muitos amigos. Sou muito brincalhão e divertido. Como gosto de aventuras, faço parte do Agrupamento de Escuteiros 740 – Nossa Senhora da Areosa.

Adoro atividades radicais e, por isso, gosto muito de fazer jet-ski ou outras atividades que me façam subir a adrenalina.

A minha doença não me tem impedido de fazer as coisas de que gosto. Procuro manter-me ativo e explorar o que de melhor a vida tem.

Hello. My name is Raimundo. I’m 15 and I have a Duchenne Muscular Dystrophy. Living in Portugal, in Porto, with my most important caregiver, my mother. I attend the High School Aurélia de Sousa. I have many friends. I am very playful and fun. As I like adventures, I am part of the Scout Group 740 – Nossa Senhora da Areosa.

I love extreme activities and therefore really like to do jet skiing or other activities that make me climb the adrenaline.

The disease has not been an impediment to doing all the things that I like. I try to keep myself active and explore the good things of life.

Alec Syphas is 6 years old from Sheffield; UK. He is full of life and laughter and loves collecting teddy bears and playing the jurassic park game with his daddy. Alec’s best memory is painting and loves to paint pictures of everything and anything. Alec would like to have a dinner with pokemon; his nans dog Sammy and his toy dog teddy Whiskers. Alec’s day is a success when he is able to go outside and have a walk with his mummy and daddy.

Mijn droom is voetbalverslaggever worden

Voetbal is mijn favoriete hobby en grote passie. Na mijn HAVO-examen volgend jaar wil ik journalistiek of communicatie gaan studeren en me gaan specialiseren in voetbalverslaggeving. Een voetbaltijdschrift heeft al eens een wedstrijdverslag van mij geplaatst, dus mijn debuut als freelance journalist heb ik al gemaakt. Het hebben van Duchenne heeft zo zijn voordelen: ik kan makkelijker mijn idolen ontmoeten, zoals hier Robin van Persie op Old Trafford in Manchester!

My dream is to become a soccer journalist. Soccer is my favourite hobby and my biggest passion. Next year, after my graduation from high school, I want to get my Bachelor in Journalism or Communication, thereby specializing in soccer reporting. I debuted already as a free lance journalist; an article that I wrote has already been published in a magazine. From time to time, having Duchenne muscular dystrophy leads to certain advantages: I can easily meet my idols, see the picture with Robin van Persie at Old Trafford in Manchester!

Yoann Le Lamer – l’excellence malgré la maladie

Yoann Le Lamer est en fauteuil depuis ses sept ans, mais sa maladie n’a jamais été un obstacle dans son cursus scolaire. Bachelier avec une moyenne de 19/20, admis aussitôt en classes préparatoires de Maths Sup, Yoann a aujourd’hui 19 ans et intègre ces jours-ci son année de Maths spé, avec comme objectif une école d’ingénieur à Toulouse dans l’aéronautique, sa grande passion. Cette réussite le jeune homme sait le devoir à toutes les aides qui lui ont permis de suivre une scolarité dans un cursus normal, au milieu des autres enfants et adolescents de son âge, là où il a pu assouvir sa curiosité intellectuelle et sa soif de connaissances.  Mais il connaît aussi  l’implication de sa famille dans son combat contre la maladie, ainsi qu’en témoigne son père, Pierre : “ Il n’y a pas de choix face à la maladie et à son évolution mais je ne veux pas baisser les bras. Il ne faut pas la laisser gagner… C’est un peu marche ou crève. Et aussi un combat, une bagarre au quotidien pour rendre la vie de Yoann meilleure ».

Tout entier tourné vers son rêve de grands espaces, Yoann a aussi passé son brevet d’initiation aéronautique et a déjà sauté en parachute pour son baptême de l’air. « Nous voulons qu’il puisse aller au bout de ce qu’il veut faire, qu’il vive sa vie ; si cela pose des problèmes, nous nous adapterons ».

Yoann Le Lamer – pursuing excellence despite the challenges of disease

Yoann Le Lamer lost ambulation at the age of 7 and though he has been using a wheelchair since then, his condition has never been an impediment to his educational achievements. He passed the baccalauréat (French end of secondary education diploma) with flying colours and an overall grade of 19 out of 20, was admitted into a much-sought-after scientific preparatory course last year and is now gearing up to start the second and last year into the course, which will lead up to his entering a prestigious aeronautical engineering school in Toulouse. Yoann is passionate about aerospace. He knows how much of his educational achievement he owes to the care and support that enabled him to go to mainstream schools, in the midst of children and teenagers of his age, where he could fully develop his curiosity and thirst for knowledge. He is also grateful for the involvement of his family in his battle against disease. “We have no choice, in the face of the progression of disease, other than battling it. I refuse to give up,” says his father, Pierre. “We must defeat it… It is indeed a case of sink or swim. It is a constant fight, a daily struggle to make Yoann’s life better.”

As he still yearns to conquer wide, open spaces, Yoann has passed a flying initiation certificate and has already taken a maiden parachute jump. “We want him to take things as far as he likes, to live his life to the fullest; if obstacles arise, we’ll adjust”, Pierre adds.

Oi, meu nome é Rafael Guimarães Lourensetti tenho 8 anos e sou brasileiro. Meu diagnostico foi no mesmo mês em que completaria meus 6 anos de idade. Tenho um irmão, o Guilherme com 4 anos e moramos com o papai e a mamãe.

Sou um menino alegre, um pouco tímido, que AMA os animais e a natureza, sou curioso, muito ativo, adoro brincar, viajar, conversar, pesquisar, ir à praia e estar com outras crianças. Levo uma vida normal como qualquer menino da minha idade, apenas com alguns cuidados extras que não me impedem de fazer nada. Atualmente curso o 3o. ano do Ensino Fundamental.

Ainda sou pequeno, mas acredito que pela minha paixão, estou inclinado a ser um futuro veterinário ou algo que eu possa estar perto dos animais.

Amo viver, estar ao lado de pessoas especiais, de aprender e vivenciar novas experiências.

Motivos tenho muitos, pra continuar a ser feliz. Que assim seja!

Hi, my name is Rafael Guimarães Lourensetti have 8 years and I am Brazilian. My diagnosis was the same month that would complete my 6 years of age. I have a brother, Guilherme with 4 years and live with mom and dad.  I’m a happy boy, a little shy, who loves animals and nature, I’m curious, very active, I love playing, travel, chat, search, go to the beach and be with other children. Lead a normal life like any boy my age, only with some extra care that does not prevent me from doing anything. Currently the 3rd course. year of elementary school.  I’m still small, but I believe that by my passion, I’m inclined to be a future vet or something I can be close to the animals.  Love live, stand next to people, to learn and share new experiences.  I have many reasons, to continue to be happy. So be it!

Το όνομα μου είναι Μανωλης Κηρυκακης και είμαι 2,5 χρονων.Η μαμά μου με φωνάζει πρωταθλητή και γιαυτό κάθε μέρα έχω προπόνηση. Κάνω φυσικοθεραπεία,υδροθεραπεία,,λογοθεραπεια και εργοθεραπεια.Η καλύτερη μου ανάμνηση ειναι τα ταξίδια με τοαεροπλάνο.Μου αρέσει πολύ να παίζω τα αμαξάκιa μου και τα αεροπλανάκια μου με την αδερφή μου.Ανθα μπορούσα να άλλαζα κάτι στο κόσμο,θα έβρισκα ένα φάρμακοπου θα γιατρεύει όλες τις ασθένειες!!!Ημέρα μου είναι επιτυχημένη όταν έχω τελειώσει τις προπονήσεις μου και πέφτω στην αγκαλιά τουαγαπημένου μου προσώπου! Της μανούλας μου!!

My name is Manolis Kirykakis and am 2.5 years. My mom calls me a champion because I workout everyday. I do physical therapy, hydrotherapy ,speech therapy , and ergo therapy. I My best recollection is traveling with plane. I love playing my cars and planes and with my sister. If I can change something in the world, I would find a drug that cures all illnesses !!! The day is successful when I’ve finished my workouts and I fall in the arms of my loved one! My mommy’s !

Leonardo Feder nasceu em 6 de março de 1985 em São Paulo (Brasil). Estudou no Colégio I. L. Peretz, escola de judaica, formando-se em 2002. Em 2000, publicou o livro juvenil, de suspense, “O enigma do assassinato das idosas”. Entre 2003 e 2007, cursou Jornalismo na Universidade de São Paulo (USP); nesse período, realizou Iniciação Científica sobre o fotógrafo Henri Cartier-Bresson, promovendo uma exposição fotográfica com imagens próprias, e o Trabalho de Conclusão de Curso sobre o documentarista Jean Rouch. No segundo semestre de 2008, esteve entre as doze pessoas, selecionadas por concurso, a participar da turma de Treinamento do jornal Folha de S.Paulo; trabalhou no veículo no ano seguinte. De 2010 a 2013, realizou Mestrado, no departamento de Letras Orientais da USP, sobre fotógrafos de origem judaica. Desde 2014, segue estudando esse tema de pesquisa, no nível de Doutorado, na mesma universidade.

Leonardo Feder was born on March 6, 1985 in Sao Paulo (Brazil). He studied at the Colégio I. L. Peretz a Jewish School where he graduated in 2002. In 2000 he published the juvenile book, thriller, “The puzzle of murder of elderly ladies.”  Between 2003 and 2007, he studied Journalism at the University of São Paulo (USP); in that period, he  Scientific Search of the photographer Henri Cartier-Bresson, promoting a photographic exhibition and also did his thesis on the documentary filmmaker Jean Rouch.  In the second half of 2008, Leonardo was among twelve people, selected to participate in the training at major newspaper Folha de S.Paulo; where he worked the following year. 

From 2010 to 2013, he worked in acquiring his Master in Oriental Languages Department of USP on Jewish photographers.  And since 2014, he continues studying this research topic, PhD level at the same university.

היי קוראים לי יהונתן. אני בן 10 גר בישראל ויש לי דושן. השנה אני מתחיל סוף סוף ללמוד בביה”ס הקהילתי הקרוב לביתי בכיתה קטנה. וזה לא היה פשוט בכלל.

עד השנה למדתי בכיתה קטנה עם מעט ילדים בעלי קשיים לימודיים לא באזור מגוריי ונסעתי לשם במונית עם מלווה. יש לי חבר אחד טוב מהאזור שלי שהוא כמו אח בשבילי ואנחנו נלמד השנה יחד באותה הכיתה . החבר שלי גר כמה רחובות ממני ואני מגיע אליו עם הטרקטורון שאבא קנה לי שלא אתעייף. אני גר באזור כפרי ויש לנו חווה לגידול בקר. אני וחבר שלי נהנים לטייל ביחד ולעזור ברפת של אבא שלי. אבא שלי מנסה לעשות הכל בשבילי מגדול ועד קטן. למצוא לי את התרופה, לבנות לי בריכה בחצר ,לדאוג שתהיה כיתה קטנה בקהילה שלנו כך שלא אסע לביה”ס בקהילה מרוחקת ואהיה מנותק מחברים. האבא שלי הוא הכי מדהים בעולם ואני אוהב אותו הכי בעולם.

אני מאמין באבא שלי ושעוד יהיה טוב בשנה החדשה שתבוא .

Hello, my name is Yehonathan. I am 10 years old and I have Duchenne Muscular Dystophy. This year I am finally going to study in the community school which is close to where I live. I will study in a “special needs smaller class”. My friend lives a few streets away from me and I get to him with the little tractor that my Dad bought me so that I won’t get tired of walking.

I have one close friend who lives in my neighborhood, who is like a brother to me, and this year we are finally going to be at the same class. I used to study in a “special needs smaller class” with a few others kids who have learning difficulties which wasn’t in the area where I reside, and used to ride there by taxi, always escorted. I am glad and relieved thought that this year I am going to study in a closer school where I won’t be detached from my friends.

My dad owns a range where he breeds cattle. My friend and I enjoy getting around together and helping at my Dad’s barn. Dad has also built me a pool in our yard for me since in my condition, it is very helpful to swim. My father is doing all he can for me and especially is working hard to find for a treatment for me. He is the most amazing Dad and I love him dearly.

I believe in my father and hopeful that the new Jewish year will bring positive development for me.