اسمى حازم، عندي تسع سنوات، من مصر
عندي اختين اكبر مني نهاد وريهام
بحب السباحة ولعبتي بينوكيو
حلمي اكون طيار و الف بلاد العالم
My name is Hazem, I am 9 years old. I am from Egypt and I have two older sisters, Nehad and Riham. I like to swim and to play with my toy Pinocchio. My dream is to become a pilot and to travel all over the world.
Tem 21 anos, faz faculdade de direito , tem uns poucos amigos desde a infância que levam ele pra divertir e estão semprejunto com ele! Gosta de cinema e vídeo games! Muito inteligente e tenta superar a doença com muita garra! Alimentamuito bem, não toma refrigerante direto, se esforça pra se manter forte e com boa alimentação ! Nos dá mais força que nos a ele! Um guerreiro que coloca qualquer um dentro do bolso! Exemplo de dignidade integridade e força! Sou sua mãe sou sua maior fã , por toda história de dor e superação e garra.
Mi nombre es Martin, tengo 22 años y vivo en Alicante (España), estoy afectado por distrofia muscular Duchenne. Mi mayor pasión es la música, soy pianista. Me considero una persona agradable, simpática y luchadora. Me encanta ayudar a los demás y conocer gente nueva.Soy el pequeño de cuatro hermanos, David, Jesús y Domingo. David, mi hermano mayor, también padecía esta enfermedad, pero falleció en 2014.
En el fin de semana me gusta ir al cine con mis hermanos y amigos, salir a pasear, tocar el piano, jugar a videojuegos online en el pc, ver series y chatear. Me encanta viajar y conocer nuevas ciudades y lugares bonitos, para conocer sus costumbres y probar su gastronomía. Una de mis experiencias más emocionantes fue cuando tuve la suerte de colaborar en untele maratón en la televisión nacional para recaudar fondos para la investigación de Duchenne, y tuve el privilegio de acompañar al piano a una estrella de la canción de mi país: Pastora Soler. En 2008 hice un viaje a Roma junto a mis hermanos y amigos del cual guardo gratos recuerdos. Fue, pese a las dificultades, la primera vez que viajé en avión, y una vez allí, la ciudad me enamoró. Desde entonces viajar se convirtió en una de mis grandes pasiones.
Lo que hice ayer y lo que voy a hacer mañana es lo mismo, VIVIR EL MOMENTO. Mi día a día empieza desde bien temprano, cuando mi madre me levanta de la cama con la grúa, me aseo, desayuno y me pongo en el pc a leer el correo y hablar con mis amigos, por las tardes viene un profesor particular de piano a casa, y también dedico media hora al día a practicar. Mi sueño seria dar un concierto de piano para muchísima gente, en un gran teatro como el Teatro Real de Madrid. Mi cantante favorito es el cantante mexicano Cristian Castro, admiro mucho su sentimiento y su grandiosa voz al cantar.
Si pudiera cambiar algo en el mundo, desearía que no existiese la guerra, que todo el mundo tuviese una vida digna y que todas las enfermedades fuesen curables. Mi día seria increíble… la mañana que despierte y me den la noticia de que la cura para Duchenne es posible.
Hello! My name is Martin, I’m a 22 years old boy and I live in Alicante (Spain). I’m affected by a disease called Duchenne muscular dystrophy, and music is my passion, that’s why I’m a pianist. I consider myself nice, sympathetic and I am a fighter. I love helping and meeting new people. I’m the youngest of four brothers, David, Jesús and Domingo. David, my biggest brother, also had this disease but he died in 2014.
In the weekend I like going to the cinema with my friends and brothers, going for a walk, playing piano, playing online videogames on the pc, watching television series and chatting. I also love traveling and visiting new wonderful cities and getting to know their gastronomy. One of the most emotional experiences of my life was when I participated in a marathon with a national tv channel in order to collect money for Duchenne investigation and I was fortunate to play piano with a Spanish singer called Pastora Soler. I traveled with my brothers and friends to Rome in 2008, and it was the first time that I took an airplane. Despite the difficulties of the travel, I fell in love with the city. That’s how travelling started to become one of my passions.
I do the same everyday… I`m living the moment. I start the day really early, once my mother wakes me up with the hoist; I take a shower and I have breakfast. Then I check my email and chat with my friends. In the evenings I have private piano lessons, and I also practice half an hour per day. My dream is playing the piano for thousands of people in a big theater like the Teatro Real (Madrid). Cristian Castro is my favorite singer, because I love how he expresses his feelings through the music and his fantastic voice.
If I could change something in the world, I’d like peace on earth, everybody living comfortable and that every disease could be healed. My day would be incredible if the moment I wake up someone would tell me that there is a treatment for Duchenne.
Nama saya Muhammad Zakur Hadif. Saya berasal dari negeri Johor, selatan Malaysia. Umur saya 12 tahun. Ketika hujung minggu kebiasaannya saya akan siapkan kerja sekolah saya serta bermain “computer games”.
Memori saya yan paling manis ialah mendapat anugerah adik perempuan pada tahun 2014 lalu. Memori yang paling kelakar ialah ketika saya bergurau senda dengan nenek dan datuk saya. Hari saya adalah hari paling gembira – setiap hari. Semalam saya melakukan sesuatu yang jarang saya lakukan. Iaitu balik sekolah terus buat kerja sekolah. Biasanya saya akan tidur dulu. Esok saya akan lakukan perkara yang lebih baik daripada semalam. Orang yang paling saya suka untuk berada disekeliling saya ialah ibu bapa saya, abang serta adik saya. Juga kawan-kawan saya. Hari saya penuh dengan kejayaan bila dapat memberi kegembiraan kepada orang disekeliling saya. Juga apabila dapat menghadapi cabaran dengan tenang serta dapat menyelesaikan dengan baik.
Jika saya diberi peluang untuk mengubah dunia – saya akan berjumpa dengan semua pemimpin negara Islam agar menyediakan laluan pengguna kerusi roda di semua tempat awam. Saya teringin sangat untuk makan malam dengan individu yang sudah meninggal dunia seperti Prophet Muhammad dan nenek saya. Untuk yang hidup, teringin hendak jumpa Nick Vujijic. Saya suka dengan trip ke Saudi Arabia, Melbourne dan Auckland. Impian saya ialah mengembara ke seluruh dunia untuk belajar kualiti hidup sebagai seorang Duchenne.
My name is Muhammad Zakur Hadif. I come from the state of Johor, southern Malaysia. I am 12 years old.
My sweetest memory is that I was blessed with a younger sister in 2014. Memory of the most hilarious was when I joke with my grandmother and grandfather about old movies. Today is my happiest day. Every day is my happiest day. I will make my day – the most happiest in my life. Yesterday I did something I rarely do. After back from school immediately do my homework. Normally I sleep first. Tomorrow I will do better than yesterday. During the weekend I would normally prepare my school work and play “computer games”.
If I am given a chance to change the world – I will meet the leaders of the Islamic countries in order to provide wheelchair access in all public areas. I badly would like to have dinner with people who have died as Prophet Muhammad and my grandmother. For the living, can not wait to see Nick Vujijic. I like to travel to Saudi Arabia, Melbourne and Auckland. My dream is to travel around the world to study the quality of life in persons with Duchenne.
The most I like to be around me are my parents, my brother and sister. Also my friends. My day is full of success if I can give happiness to those around me. Even if it can meet the challenges in stride and it can finish well.
eHola, mi nombre es Edgar Navone, soy de Venezuela. Tengo 17 años. Me diagnosticaron la distrofia a los seis años. Tengo tres hermanos dos varones sanos y una hermana. Por los momentos no estoy estudiando. Me duelen mucho las piernas y me siento cansado.
Hi, my name is Lucas miyazaki nichel, I live in Curitiba Brazil. I am 18 years old and will soon be finishing high school. I enjoy listening to rock music, metal, I enjoy playing League of Legends and one of my favorite past times is going to the movies with my brother and friends!
Mi hijo es Jorge Gerardo Enriquez Montiel, tiene 11 años tiene Duchenne, va en 5to grado de primaria y es una personita muyinteligente y noble, tiene una memoria sorprendente para su edad y por lo mismo se sabe toda la Linea del metro de la Ciudad de Mexico y tiene muy buena retencion para recordar lugares y fechas importantes como historicas. Su sueño creo yo y por que me lo ha pedido, es a ventarse en paracaidas o viajar en helicoptero por toda la Ciudad de Mexico, y visitar Disneylandia ojalaalgún día se le cumpla su deseo.
Me llamo Miguel Federico Martinéz tengo 16 años nací el 27 de mayó de 1999 soy del distrito federal delegacion magdalena contreras. Me dedico a investigar sobre carros,planetas y video juegos.
Meet Anil Jalhan, also known as “The DMD Guy” on social media. At 26 years old, he shares his journey with Duchenne muscular dystrophy (DMD). Despite facing physical challenges, Anil broke barriers by graduating from university and become an independent individual. As a Duchenne Ambassador, he aims to create a positive community, raise awareness, and inspire others to share their stories.
“My name is Anil and I am 26 years old, living in the UK. I thought I would talk about my Duchenne Muscular Dystrophy (DMD) journey. Prior to my diagnosis I grew up not knowing I had it and even my parents didn’t know. As I was the first boy born after my parents had two healthy children, it was likely I would be healthy too. Eventually we found out that boys were mostly affected and how it can be passed down in the family.
I don’t remember much, but I remember walking to nursery and school with my mother. Eventually my mother would receive a phone call from the school informing her that I kept falling frequently and was moving much slower than other kids. This was the very first signs of the condition. Once we decided to get me checked out, it was clear what was wrong with me. I was diagnosed with Duchenne Muscular Dystrophy (DMD)
After the confirmed diagnosis, my future was full of questions and uncertainty, as I didn’t know how it would affect me. I would continue to move forward while going through these physical changes. I would experience being wheelchair bound and weak whilst enjoying my primary school days.
Once the time was right, I would later make my transition to my new special needs school. This was a huge moment of my life, as the school helped me become who I am today. Giving me the confidence to become an independent disabled person.
I am the person today because of this experience. I believe my disability has taught me many valuable life lessons and has helped shape the person I am today. My journey has been difficult with many barriers and many still to come. But I aim to just keep going. I usually like to say my future may not be clear, I may have a disability, but this will not stop me from achieving my dreams.”
“I want to say being physically weak and all the constant changes I have and will go through. But I did come to the realization that it’s something I had to just accept and I could still pursue my dreams. One of my dreams was to graduate from University and I did back in 2019. With the help of assistive technology this was possible. One major barrier was my housing situation which I will talk about in another post hopefully. But this really was a serious one which stopped me from getting out of the house and sometimes even going to university.”
“With Duchenne and my page, my goal has always been to create a positive Duchenne community for other DMD guys like myself. Also to raise as much awareness as possible. The WDAD has a similar goal which really motivated me to get more involved. I also wanted to share my story to hopefully encourage others to share theirs.”
“As someone living with Duchenne Muscular Dystrophy (DMD) like many we go through many life changing moments during our Duchenne journey. With many battles and emotional moments. From not being able to walk or losing the ability to play your favorite sport. I think my interpretation of ‘breaking barriers’ is to have the ability to accept these changes and adapt to them while trying to remain positive. Lastly, I also think going through all these trials and tribulations and still being able to achieve something is breaking barriers. No matter how big or small the goal is.”
“The journey can be quite emotional at times and tough. The only thing we can do is try our best to enjoy life no matter how long it is. Also to create these precious memories. Through my stories I hope to show the reality of Duchenne but also try and show how life could be enjoyed as well. Another general message to the world is that everyone is affected by this, men, women and kids so let’s do something about it.”
“I hope to see more people with Duchenne continue to break barriers and to share their story. Further increasing the awareness for Duchenne and Becker Muscular Dystrophy. In terms of my future I also will continue to overcome challenges. I hope to make use of any opportunities I get to raise awareness for Duchenne. Lastly I remain hopeful that there will be a cure in the future mainly because of our awareness efforts.”
We invite you to follow Anil’s story via Instagram and TikTok. Here he shares messages on resilience and the pursuit of joy in life. All while advocating for a future cure through increased awareness efforts. We are looking forward hearing your story about breaking barriers!
Instagram & TikTok: thedmdguy
Meu nome é Rafael Lellis, tenho 24 anos,Moro no Rio de Janeiro. Sou atleta de Power Soccer ou Futebol em Cadeira de Rodas Motorizada, o futebol é minha paixão e sempre dei meu jeito de jogar. Enfrento a cada dia os desafios da melhor maneira possível e com bom humor. Sempre que posso estou com meus amigos, aproveito também para sair nas nights para me divertir e sempre que eu posso vou para cidade de Saquarema encontrar meus amigos e aproveitar as lindas paisagens . Meu maior sonho como atleta é vestir a camisa do Clube de Regatas do Flamengo.