Category: Duchenne Stories

Eu me chamo André, hoje tenho 6 anos e fui diagnosticado aos 2 anos. Sou uma criança muito feliz, alegre e pura. Tenho muita vontade de viver, gosto de estar com pessoas e principalmente as que eu amo. Sou criativo, inteligente e muito carinhoso. Gosto de viver em contato com a natureza e descobrir coisas, sou muito curioso. Apesar das limitações que aparecem aos poucos, nada me incomoda, com minha família estou seguro e confiante! Sou brasileiro, mas hoje estou morando na França. Conhecer lugares diferentes e experimentar o que a vida nos oferece é o melhor que eu posso viver. 

My name is Andre, today I am 6 years old and I was diagnosed at the age of 2. I´m a very happy child, cheerful and pure. I really want to live, I like being with people and specially, I love them. I am creative, smart and very loving. I like living in contact with nature and discovering things, I am very curious. Despite my limitations, which are slowly showing, nothing bothers me, with my family, I am safe and confident! I’m Brazilian, but I am now living in France. Knowing different places and experiencing what life offers us is the best I can live. 

My best memory is still yet to come

On a typical day for me I write, text message friends, watch some form of sport, and think about theatre. Yesterday I went to work in the morning and in the afternoon I finished off working on a play I am writing. My plan for tomorrow is … going to an acting workshop. On the weekend, I like to watch Rugby League and have a couple of drinks. My day is a success when I laugh more than 3 times a day or achieve something for myself. The person I most like to hang out with, is my brother. To dinner, I would invite: playwright, William Shakespeare and actor, Dennis Hopper. If I could change something, I would change the mindset of disability equipment manufacturers from a financial focus to being more client satisfaction centred.

My favourite experience was acting professionally on stage in a one- man show called, “Propelled.” My funniest memory is when I was about 10 years old, sleeping over a friends’ house and just being an average kid: staying up late, spying on girls and sharing lots of laughs. My best memory is still yet to come.  ;-D

My dream is to continue living life to the fullest and to overcome many more barriers.

Je m’appelle Gabin, j’ai 4 ans et demi, et quand je serais grand, je serai policier ou dresseur de tigres, ou les deux! 

My name is Gabin, I am 4 and a half years old, and when I grow up, I’ll be policeman or tiger tamer, or both! 

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 .

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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.

Witam ! Nazywam się Maksim Volkov, mam 9 lat i uwielbiam pływać tak bardzo, że nawet otrzymałem za to medal i puchar. Mieszkam z moją siostrą Katią i rodzicami niedaleko Gdańska, w północnej części Polski. Moim największym marzeniem jest zostać w przyszłości detektywem, ponieważ uwielbiam rozwiązywać zagadki. Lubię chodzić do szkoły ponieważ mam tam wielu przyjaciół i bardzo lubię moją wychowawczynię, panią Beatę, która pomaga mi podaczas lekcji w klasie. Mój dom jest bardzo radosny, ponieważ mam dwa koty i dwa psy, z którymi spędzamy dużo czasu na zabawie. Najbardziej lubię mojego kota, który przypomina Garfielda, ma na imię Twister, śpi ze mną w łóżku i zawsze tuli się do mnie kiedy jestem smutny. Gdybym mógł zmienić coś na świecie to chciałbym  zmienić smutnych ludzi na szczęśliwych ludzi. 

Hi! My name is Maksim Volkov, I am 9 years old and I love to swim so much even I received a medal and trophy. I live with my sister Katia and my parent in Gdansk in the North of Poland. My dream is to become a detective, because I like to solve a mystery. I like to go to school because I have many friends there, and I like very much my teacher Beata who is helping me in the classroom. My house is very cheerful because we have two cats and two dogs, so we spend a lot of time to playing with them. I like most of my cat that looks like Garfield, he’s name is Twister and he sleep in my bed and snuggles up to me when I’m sad. If I could change something in the world I’d like to be able to change sad people into happy people. 

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.

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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.

Hi my name is Harry Halpin and I am 4 years old. I live in Formby, England with my mummy, daddy and sister Grace. My family are very important to me. I love seeing my grandparents as often as possible. My Nana has a vegetable patch. I enjoy planting the seeds, watering them and watching them grow.  I also bake bread with my nana and love eating the crust when it is warm. My Granddad has kept all my daddy’s old toys and I spend hours playing with tractors and cars. He always takes us out to my favourite restaurant for pizza too. 

My favourite place is being in the swimming pool. I love going underwater and feeling the freedom to move around. My legs don’t feel as stiff and my body is easier to move around. I hope one day I can swim and will learn to be a deep sea diver. 

I am also starting school this September this will be a big change for me but I know I will be learning lots of new skills and will have a great time making new friends. 

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!!

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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 !

I am about to start a new chapter in my life along with so many other 18 year olds who have finished their secondary school days. 

This new chapter in my life is university, a Chance for a fresh start, new friendships and endless opportunities. Having the opportunity to go to university is a gift that should not be taken for granted. It was a pleasant surprise to find out that despite not quite getting the grades on results day, that I had secured a place at the university of Nottingham to study Neuroscience. This was clearly meant to be. I have feelings of excitement and apprehension as a new adventure lies ahead, with new challenges and a chance to shape my future and discover my true potential. University is a great place to grow as a person and to discover who you are and what you stand for; it is a chance to take risks and to stand out as an individual, to speak out, have your voice heard and ask questions of the world and of yourself. For me there are massive changes in my life other than starting university, such as having and using a powered wheelchair for the first time in my life and all the challenges and frustrations that it presents, as my condition, DMD has deteriorated over the past two years. However this new powered chair will enable me to do all the things that any other 18 year old would expect to do. The chair will enable me to move forward in my life without DMD holding me back. It will allow me to make the most of the opportunities that university presents. I am so thankful to all those who have supported me and have helped raise the money to be able to afford the powered chair, which will enable me to live life to the best of my ability. 

There is so much more to think about and organise before I go off to university, such as making sure my room is fully adapted to my needs as well as making sure I have a care package in place that meets my needs. This makes things just a little more complicated. But all these things will ensure that I can do all the things that I want to do, to be able to make the most of university life. Going to university is a massive change, moving away from home, making decisions on your own and facing the world. Without doubt there will be highs and lows, but at the end of it all, undoubtedly you will change and develop as a person, hopefully for the better. 

I have faith that it will all work out and this will be the start of an amazing journey. Having Duchenne should not be seen as something to hold me back and although it is not easy to get others to understand the implications of Duchenne and the true severity of the condition, it will not prevent me from living life. University should be the best three years of your life and you should not let Duchenne or any other condition bring you down. There will be days when your condition does bring you down, but you will get through those days and keep on keeping on. Having Duchenne should not prevent you from doing all the things in life you wish to do. 

“For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be strong in character and ready for anything”. James 1:3-4 

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!

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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!