“Live life to the fullest!”
Juan Angel is a cheerful, social Mexican , aged 27. He loves drawing, listens to music a lot, sings and plays keyboard in a rock band and has a passion for cars – especially foreign makes. He likes to go out and have fun with his friends, to a club, the movies, a bar or a party.
How did your parents discover you have Duchenne muscular dystrophy?
Juan Angel:
Doctors performed a genetic test when I was 7 years old. The results confirmed I had Duchenne muscular dystrophy. The doctor told my mother, who was pregnant with one of my sisters, to completely focus on that pregnancy and not to pay attention to me. After all, I was going to die soon anyway.
This message was very hard and painful for my parents, the more because the way in which the doctors seemed to communicate was nothing short of disrespectful. They had no knowledge whatsoever about dystrophy because at that time, information was really hard to get hold of. But my parents trusted in God and found the strength to figure out how I could get better and how they could learn to cope with my disability.
I ended up in a wheelchair at the age of 15, but I still try to be as independent as I possibly can. I use a special fan (Bilevel Positive Airway Pressure) to breathe while I sleep, but I manage to do without during the day.
What helped you to deal with your disease?
Juan Angel:
The help of my family has always been crucial in the first place. My father – my angel that died 8 years ago – has always been my hero, but also my mum and my sisters do help me a whole lot. My determination to accept my disease and to never give up, is what keeps me going, thanks to Téléton/CRIT Occidente and the Asociación de Distrofia Muscular A.C. They always have played an important role in me remaining stable. They are offering therapies to keep me strong and healthy, both physically and mentally.
At Teletón/CRIT Occidente I learned how to love myself as a person without caring about those who call me ‘ugly’ or ‘different’. The Asociación de Distrofia Muscular helped me on an academic level through scholarships with getting my secondary and bachelor degree. I am now investigating the option of studying graphic design online so that I am not depending on transport.
How do your friends deal with the disease?
Juan Angel:
I have always had many friends, but my time at school remains the most memorable. Four times a day I had to climb 20 steps up and down. I figured out a way to make it easier for me, but still it took me 10 minutes which is way longer than my classmates. My friend Edgar always waited for me and the other kids from my class took good care of me on the playground. It was more difficult for me to stay upright but my friends always got me back on my feet when things went wrong. When playing soccer, I could be the goalkeeper because I am obviously not the best runner.
My teacher José allowed me to arrive in class at half past 8 in the morning, although school started at 8. I was simply unable to make it on time because I had to follow therapy at Teletón. He sometimes just let me stay in class during breaks so that I didn’t have to go up and down the stairs all the time. He then asked some of my friends to keep me company and bring me a drink.
I have friends pretty much everywhere. Carlos Lopez – another angel that left us 1,5 years ago -, Juan Luis and Chava are my best friends.
What is the impact of Duchenne on your family?
Juan Angel:
In my family everybody knows my limitations. They help me out a lot and I can talk with them about my condition, no prob. And I do like to talk about Duchenne because there’s so few people that really know about it. I kindly explain them what Duchenne is all about and what can be done to keep my condition stable. This is my way of enhancing people’s curiosity and awareness. I fully accept who I am, with the help of my family.
But also my ‘larger’ family has helped me tremendously: my brothers in law, nephews, uncles, friends. I truly appreciate everybody’s help. Gracias a Dios.
How well/un-known is Duchenne?
Juan Angel:
The disease is still pretty unknown among the public. That is the exact reason why I like to talk about it so much. People should know the very possibilities and limitations of Duchenne. Thank God I was lucky to meet the right people with sufficient knowledge about the dystrophy. Great progress has been made over the last years when it comes to treatment. For the time being, a curative medicine hasn’t been developed yet, but people with Duchenne can lead a qualitative life and be happy. Acceptance is still a big hurdle to take, but being strong is so massively important!
If tomorrow all would be possible, then…
Juan Angel:
I dream about recording a second album with my band ‘Los Big Boys’, with our own songs this time so no more covers. Those songs should demonstrate the importance of positivism, of believing there are options. Never give up! Music touches people. With our band – of which almost all members have a certain disability – we would like to bring this message in a fun way. Although it would be nice to become a bit more famous and perform more. 🙂
Definitely have a look on our Facebook page!
I also dream about starting my own company that specializes in improving objects and clothing in order to enhance the life quality of people with a disability. I have made my own wheelchair with a car seat because the standard seats weren’t comfortable enough. By experiencing the discomfort myself, it is easier for me to find a solution. By doing so, I try to make sure others can also live a better and more comfortable life.
What would you like to tell the world?
Juan Angel:
Try to be strong and do not surrender to your problems. It might sound hard but those problems will always be present, so you better find a way of dealing with it. Love your child and help it to realize its dreams and plans in life.
I would love to be an example for other people with dystrophy, show them it is indeed possible to live happily. Live life to the fullest!