Summer is 6 years old and we live in Australia.We found out Summer is a carrier for Duchenne Muscular Dystrophy when she was 5yrs old. She was very late to sit crawl and walk. She finds it difficult to run and complains a lot of tired legs. I knew there was something different about Summer her whole life, she has had elevated CK levels from 2 yrs old and was finally diagnosed as a carrier of DMD after a full chromosomal microarray was done. I as her mother was tested also am not a carrier.Melissa Brunet
Story by Teun van Wiggen
Hoi, ik ben Teun. Ik woon in Nederland en ben 6 jaar. Ik ga al naar groep 3 na de zomervakantie. Ik speel graag met mijn vriendjes, vriendinnetjes of met mijn zusje van 4. Ik hou van racen op mijn fiets. Ik gebruik mijn loopfiets voor als we een eindje moeten lopen. Ik fiets heel graag naar school en doe vaak een race in de straat samen met mijn zusje. Ik ben ook dol op zwemmen en ga elke week naar zwemles. Ik bouw graag alles van Lego, of vlieg door het huis met Dusty van Planes (Disney). Ik wil later piloot worden!
Hi, my name is Teun. I live in The Netherlands and I am 6 years old. I will join the third class of elementary school after the summer holiday. I enjoy playing with my friends or with my 4 year old sister Kiek. I love racing on my bike. I use my walking bike when we go for a walk. I love cycling to school and doing races in the street with my sister. I also love swimming and go to swimming lessons every week. I often build sculptures from Lego, or ‘fly’ with Dusty of Planes (Disney). I want to become a pilot some day!
Story by Dimitrios Athanassiou
Hi my name is Dimitris I have two beautiful boys Hermes and Hector with my wife Omaira and we live in Athens, Greece. My older son Hermes has DMD.
What is your dream? My dream is my son’s generation to be the one that in their lifetime we eradicate Duchenne.
What do you like to do? When I find some free time, which isn’t very often, I like to take my family to the beach.
If you could change something in the world, what would you change? I would change the future of the rare diseases.
If you could invite any three people dead or alive to dinner who would that be? the ones that will find the cure for DMD
What was your favorite experience? From going down the Amazon on a boat to riding a bike at 300 kph, nothing was more exciting for me than being present at the births my two children.
What is your best memory? Their first smiles
What is your funniest memory? The expression on the face of my first son when he found out that he is not alone! My typical day starts s at 7am when I wake up and get Hermes ready for nursery before dropping him off. Then it’s straight into my email account where I will exchange messages, build contacts, talk to parent, discuss new information and trials, upcoming medical conferences and parent advocacy. I will take around 30-40 phone calls day from at home and overseas on a typical day for this purpose, then pick up my son around 3.30pm, more emails, more campaigning, stop for dinner, maybe take a final phone call or join a conference call around 10pm, then asleep at 2 or 3 am. If all the above happen I consider it a good day. The next day I do it all over again happily!
What will you do tomorrow? The same as what I will do today, but with a small change because we are driving three hours to jump on a boat and have a this weekend in Cyclades.
Who is your favorite person to have around you? My wife because she beautiful, kind, patient ( with me ) and very smart (says Omi ? )who is checking what I am writing !!!!)
My day is a success when….my family is smiling and we are one step closer to cure DMD
Story by Florencia Schwab
Mi nombre es Florencia Schwab, tengo 8 años y vivo en Coronel Suárez, Provincia de Buenos Aires, Argentina. Estoy cursando 3º grado del siclo básico, me gusta ir a la escuela y compartir cosas con mis compañeros de la escuela. Yo tengo distrofia muscular desde nacimiento, tengo mi papá y mi tia que también tienen distrofia muscular; camino por mis propios medios aunque tengo dificultades para correr, subir escaleras, se me caigo me cuesta levantarme y demás cosas, pero trato de hacer una vida lo mas normal posible. Cuento un día mio como es: me levanto a las 7 Hs a desayunar y a las 8 Hs ingreso a la escuela, salgo a las 12 Hs, me pasan a buscar mis papas y vamos a casa a almorzar, después hago los deberes si tengo y en cada día de la semana por la tarde tengo diferentes actividades; los lunes paso la tarde con mis abuelos y tengo kinesiología, los martes voy a inglés y natación, los miércoles tengo terapia física y kinesiología, los jueves inglés y natación y los viernes terapia física. Los fines de semana me gusta dormir, invitar alguna amiga a jugar y jugar con mi tablet. Me gusta ayudarle a cocinar a mi mamá y a mi abuela. Me gustan mucho los animales, especialmente los perros. Me gusta ir de vacaciones y poder estar en la pileta lo mas que puedo, me gusta salir a pasear de noche y comer pizza o panchitos. Me gustaría poder viajar a Disney.
My name is Florencia Schwab, I am eight years old and I live in Coronel Suarez, Buenos Aires, Argentina. I’m in 3rd grade, I like going to school and to share things with my classmates. I have muscular dystrophy since I was born, my dad and my aunt also have muscular dystrophy; I can walk on my own, but I have difficulties running, climbing stairs, I fall and it is hard for me to get up and other things, but I try to make life as normal as possible. I will tell how my day looks like: I get up at 7am for breakfast and I go to school at 8am, I leave at 12pm, my parents pick me op and we go home for lunch, then do homework and each day during the week in the afternoon I have a different activity; Mondays in the afternoon I stay with my grandparents and I have physical therapy and kinesiology, Tuesdays I have English and swimming classes, on Wednesdays have physical therapy and kinesiology, on Thursdays English and swimming classes and Fridays swimming and physical therapy. On weekends I like to sleep, invite a friend to play and to play with my tablet. I like to help my mother and grandmother cooking. I love animals, especially dogs. I like going on vacation and to be in the pool as much as I can, I like to go for a walk at night and eat pizza or panchitos. I would love to go to Disney.
Story by Andrew Sedmihradsky
Starting on Father’s Day this year, my four year old son Max and I set off on a 600 km cargo bicycle ride from Ottawa to Hamilton along the Trans Canada Trail – a journey we named ‘Max’s Big Ride’. Max and I made this ride to advance awareness about Duchenne muscular dystrophy and also to raise money for research. So far the ride has raised close to $55,000.
Max’s Big Ride was a true family affair as Max’s grandparents and mother also hit the road with us in support roles. It was a tremendous adventure and we saw lots of wildlife along our scenic route and met even greater numbers of kind and incredible people. Max and our family were welcomed warmly by cheering crowds at various points along the way and we were all deeply touched and incredibly thankful for all the support we received.
I am happy to report we made it to the finish line, arriving in Hamilton’s Bayfront Park on Canada Day, July 1st, to the cheers of our friends and supporters. While Max’s diagnosis has been very hard for our family to deal with, we have decided to roll up our sleeves and fight this horrible disease as best we can. This year’s ride is just the beginning, and planning for our 2016 fundraiser will begin in a few weeks.
Story by Luis Armando Antuna Valiente
Hola! Mi nombre es Luis Armando Antuna Valiente, he cumplido 14 años, tengo 5 gatos una tortuga y dos pájaros. Terminé el segundo de secundaria, tengo distrofia muscular Duchenne, me gusta jugar Xbox en linea. Mi juego favorito es Grand Theft Auto V. Vivo con mis padres en México.Les quiero decir a todos los niños que tienen Duchenne que sean felices y le echen muchas ganas, espero que muy pronto exista un medicamento en México y en todos los lugares del mundo que nos alivie, cure y haga que caminemos y vivamos más felices todos los niños que luchamos a diario con esta enfermedad al igual que sus familias.
Hi! My name is Luis Armando Antuna Valiente, I turned 14 years, I have 5 cats, a turtle and two birds, I finished second grade, I have Duchenne muscular dystrophy. I like to play games on the Xbox online. My favourite game is grand theft auto V. I live with my parents in Mexico. I would like to say to all boys with Duchenne that I wish them to be happy and enjoy life, I hope that very soon a drug will be available in Mexico and the rest of the world that will relieve, cure and make us walk so that we, and our families, all can live happier lifes.
Story by Maria & Hanna Fries
My name is Maria Fries-Lindgren. I was born in Sweden and I also went to schoolthere. 25 years ago I moved to Switzerland to work and I’m still here. I’m marriedwith Daniel and we have two lovely children. Mattias, 11 years old who hasDuchenne, and Hanna, 9 years old. I do not have a professional life, I stopped working when my son was born. I like very much being mom and housewife. I also like writing, reading, cooking, gardening and to jog. I do some voluntary service with the websitewww.duchenne-schweiz.ch.I answer mails from families recently diagnosed with duchenne and I try to help andsupport them. I was recently elected as a board member in the Swiss muscle society(Schweizerische Muskelgesellschaft).
My dream, my biggest dream, is that a cure for Duchenne soon will be found.During the weekends I like to do something with my family. Bicycling, walking,playing games…If I could change something in the world, I would end all wars.I would like to invite the pope, Wladimir Putin and my grandmother, who died when Iwas only one year old. My favourite experience is the birth of our two children.My funniest memory is when I meet my mother (once or twice a year) and we sittogether and talk. Suddenly we start laughing, just like that. A glance, and weexplode in a warm hearted laugh, without a reason. It happens every time we meet.I wake up at 6. Then I get up, make lunch for my husband and prepare breakfast forthe children. After they are gone to work and school, I go out to jog. After that I dosome washing and cleaning. Some days I have to do some office job, answering e-mails or preparing some papers. At 11 I cook lunch for the children. We eat at 12.They go to school again at 13.15. Mostly I work a little bit again. Kids are back at15.15. I help them with their homeworks. My son likes to bake, cakes and bread,and we often do that together. I prepare dinner and when my husband comes home around 18.30 we eat. The children go to bed around 20. Then my husband and I sit on the sofa with a cup oftea and talk a little bit. Some evenings he has to work a little bit on the PC, then Ijoin him on my PC. Or I read a book. I go to bed around 23.
Yesterday I met 10 great duchennemoms! I had organized and invited duchennemoms from the german speaking part of Switzerland to meet and exchangeexperiences, and to have a great day together, of course. Some of them I met forthe first time. I was overwhelming to learn about so much power and strength andlove! We took a boat trip to a small place where we got off the boat and had a nicelunch in a beautiful restaurant. We talked and talked. We laughed and we cried. Lateafternoon we went back with the boat, an old steamer, and enjoyed the sun, thewind and the beautiful sight of the mountains. It was a wonderful day!Tomorrow I will go for a jog first thing in the morning. Then I will iron a load ofclothes. I will have to pack a small suitcase also.Since two years now, my son takes part in a clinical trial in Paris and we travel every week with him to France. We take the train (TGV) from Basel. During travelling I will do some work on my laptop, answering e-mails and preparing some documents. IfI get tired I listen to music and close my eyes. When we arrive in Paris I walk withmy son in the wheelchair to the hotel, it’s a 15 minutes walk along the river Seine. After our arrival in the hotel we have a procedure, it’s always the same… We both sitin the bed, my son watches TV and we eat a sandwich. During a commercial break hetakes a short shower, during the next one he brushes his teeth. At 22 we switchof the TV and the light. Holding his sweet little hand we fall asleep. We would bothprefer to be at home in our own beds, but we know how important the clinical studyis and as he never complains about it, I neither do I so.My favourite person to have around me is… I don’t know.
I don’t have any favouritepersons to have around me, except my family. I like be being alone, so maybe theanswer is: nobody ?I’m Hanna Fries, I’m the sister of Mattias. Mattias has Duchenne. I’m 9 yearsold. I live in Switzerland. I would like to be a popstar.I like to draw, play with barbies and Legofriends.I also like to play outside. And of course I love to sing and to dance.Everything should be for free! And that everybody in the world has fresh andclean water. I would like to invite Taylor Swift, my grandfatherand my best friend Lorena.My favourite experience was to learn to dance.My best memory is from a camp together with other kids.My funniest memory is when my little cousin went with us to an amusementpark. There she went with a ghost train. I was waiting outside. When she came out she laughed so much that she cried and I laughed with her. I wake up at 6.30. After I have got dressed, I drawa little. Then I have breakfast.
I go to the toilet and brush my teeth.At 7.50 I go to school with my brother. School starts at 8.10. At 9.40 there is a break where I play outside with my friends. Schoolstops at 11.40. Then I go home and have lunch which my mother cooked. Some days I have school in the afternoon. Then I leave at 13.10 and come back twohours later. I have homework everyday to do. Sometimes I play with a friend, or go to a dancelesson. I have dinner at 18.30, then I brush my teeth. I go to bed at 20.30.Yesterday I went to my grandmother and had lunch with her. In the afternoonwe took a boat trip on the lake of Lucerne. My mother picked me up in the evening and we went home.Tomorrow I will have to go to school again. I haveno choice!My favourite person is my best friend Lorena.My day is a success when… nothing bad happened to me and nobody saidsomething stupid to me.
Story by Sébastien Roch
Hello, my name is Sebastian, I am 32 years old. I live in a small village in the French Alps, near the Swiss border. Grace has a cable car near my home, I can admire a magnificent panorama and Lake Leman. I was born in Indonesia and have been adopted.
I love nature and animals, since childhood I was surrounded by cats dogs, they give me the strength to live without them I would not want to fight . Nature and animals are my strengh. I have a great interest in Eastern cultures, Buddhism. I’m a fan of astronomy and I make beautiful videos and photo montages. I love computers. After obtaining a diploma of general culture, I could not continue higher studies because I have been harassed by teachers. Apart from my mother, nobody, no association helped me.
But I fight against the disease, I want to live.
Breaking Barriers: The Story of Bert Gooris
Meet Bert Gooris, a 32-year-old from Belgium, living with Duchenne muscular dystrophy. This year, for World Duchenne Awareness Day (WDAD), he is one of our Duchenne Ambassadors. Over the next few weeks, Bert will be sharing his journey on breaking barriers in his personal life.
About Bert Gooris
“Hello, I’m Bert Gooris, a 32-year-old living with Duchenne muscular dystrophy in Leuven. Though I reside with my parents, I have my own space in the house, complete with a desk, room, and bathroom. I am a positive person and a dedicated family man. My 21-year-old sister also lives with us, and my older brother, who doesn’t have Duchenne, resides in Landen. It was a shock for me and my family to learn that my sister is a carrier of Duchenne muscular dystrophy, when she was 18 years old. Recently, I got a tattoo symbolizing the strong bond between me and my siblings. My parents have always supported my participation in various activities, like playing soccer and riding my bike. Although I faced bullying in school, I stood up for myself and continued my education smoothly, making some of the best memories during my college years.”
Daily Life with Duchenne
“Due to Duchenne, I had to readjust my ideas about what I wanted to become in the future. At home, when we talked about further studies, I wanted to attend culinary school to become a chef. However, it soon became clear that this would not be feasible in the long run due to the loss of function in my arm and leg. That’s why I decided to pursue something administrative because working with computers would remain possible for a longer time. Even in football, I had to admit that playing matches became too difficult, and eventually, I couldn’t participate in training sessions anymore, so I wouldn’t become a footballer.”
Duchenne Ambassador
“At school, I had to stand up for myself, explain that I had the disease, explain why I couldn’t run as fast, and why I was heavier than others. This made me a person who cannot tolerate injustice and will stand up for the weaker ones in society. As I grew older, I encountered more stories of injustice or shortcomings, and I became more aware that many people still don’t know about the disease despite the efforts made. That’s why I see it as my duty, as an adult living with Duchenne, to take on the role of ambassador now. I want to share my story with other individuals with Duchenne to encourage and support them. By doing so, I aim to create global awareness.”
Interpreting ‘Breaking Barriers’
“Well, it’s about time we dare to break those barriers and push for change. Change in inclusion, belonging, being informed about medication, assistive devices, the right to certain benefits, and the steps to follow during important milestones in life. It should be clear for everyone what rights they have and where to access relevant information. The time has come for people with disabilities to be fully accepted by society, and administrative processes for them should be significantly streamlined.”
Key Message
“It’s still a tough world for people with disabilities. We are just like any other individuals with the right to be fully included, 100%. We lead lives just like everyone else. If we collaborate and are truly heard, we can overcome many obstacles together.”
Future Plans
“In the future, everyone should be aware of these diseases. Efforts should be made to grant certain rights to people living with Duchenne and Becker, or any other conditions.”
We invite you to follow his journey by following him on social media.
- Facebook: Bert.Gooris
- Twitter: @UmbertosMission
- Instagram @Umbertos_Journey
- LinkedIn: Bert Gooris
Story by Alexandru Daniel Croitoru
Urcă orice munte, treci peste orice pârâu, / Curcubeul îl urmează, până ce visul tău se realizează
Numele meu este Alexandru Daniel Croitoru am 9 ani si sunt din Bucuresti, Romania. Sunt un copil cu multe visuri frumoase şi îndrăzneţe dar nu imposibil de realizat. Imi place sa ma joc sa cant sa dansez sa calatoresc si sa mă bucur de orice clipă a copilăriei . Am invatat că un vis poate prinde aripi dacă există voinţă, iubire, muncă si credinţă. În visele mele sunt , un înger cu baghetă fermecată care îndeplineşte tuturor dorinţele frumoase. Acestea sunt versurile mele preferate dintr-o poezie pe care am învățat-o la şcoală la ora de engleză care ma motiveaza si imi dau incredere.
„Climb every mountain, pass every stream, / Follow the rainbow, till you find your dream.”„Urcă orice munte, treci peste orice pârâu, / Curcubeul îl urmează, până ce visul tău se realizează.”
Sunt un copil ambitios , energic şi nu-mi poate lua nimeni dreptul la a visa la un univers al meu special, plin de bunătate, iubire si frumuseţe. Daca as avea puterea de a schimba ceva in lume as crea o lume minunata a copiilor cu mult soare si mii de jucarii pentru toti copii, o lume a povestilor. Zilele din timpul saptamanii pentru mine arata ca o cursa contra timp deoarece ne place sa dormim si atunci ne trezim la limita si incercam sa nu uitam sa ne spalam pe dinti, sa mancam, sa ne imbracam, sa luam ghiozdanul, temele si sa mergem in graba catre scoala. Seara la cina as invita parintii deoarece clipele frumoase petrecute alaturi de cei dragi, sunt cele mai frumoase intr-o familie. Diminetile din weekend sunt cele mai frumoase deoarece lucrurile se fac intr-un ritm normal si fiecare lucru se face cu placere si la timpul lui. Mami pregateste micul dejun iar apoi sunt liber sa ma joc pe calculator sau pe X-box jocurile preferate . Tot in weekend am in program sa merg impreuna cu tatal meu la piscina sa innot iar apoi in parc , la film sau in vizita la bunici si la verisoarele mele. Parintii mei sunt cele mai importante persoane din viata mea. Cea mai frumoasa amintire a mea a fost legata de vizita la parcul de distractii Lego Land din Germania de anul trecut . A fost cel mai frumos cadou al parintilor pentru mine .
My name is Alexandru Daniel Croitoru. I am 9 years old and I live in Bucharest, Romania.
I am like any other child on this earth, with lots of beautiful and sometimes daring dreams, but none of them impossible to accomplish. I like very much playing, dancing, travelling and, in general, I enjoy any moment of my childhood. I have learned that a dream can become true if there is enough will, love, work, and belief. In my dreams I am like an angel with a magic wand which fulfills everyone’s most beautiful wishes. These are my favourite rhymes from a poem I’ve learned at my English classes in school. It motivates me a lot and fills me with huge trust:
“Climb every mountain, pass every stream, / Follow the rainbow, till you find your dream.”
I am an ambitious kid filled with energy and nobody can steal my right to dream of my special universe, full of good deeds, love and beauty. Had I have the power to change something in this world, I would create a sunny and marvelous children’s world filled with thousands of toys for all kids, a sort of fairy tales’ world. The usual week days are kind of a race against time. We like oversleeping a little and when we finally decide to jump out of our beds we struggle to brush our teeth, eat, get dressed, prepare the school backpack, put my homework inside, and race to school. In the evening, at dinner time, I would invite my parents since there is nothing better than the time spent with our loved ones in the middle of the family. Of course, the weekend mornings are the best, because things are no more a race, we take our time, everything is done at a normal pace and with pleasure. The rush is gone! Mummy prepares the breakfast, then I am free to enjoy my preferred games that I play on the computer or on the X-box. My parents are indeed the most important persons in my life. My best memory is the visit I made last year at the Legoland Park in Germany. It was the most beautiful present my parents gave me.