As one of the oldest living individuals diagnosed with Duchenne muscular dystrophy, I’m called an inspiration, practically on a daily basis, but the truth remains. Everyone who fights this disease encourages and motivates me to continue, despite the odds. Children are dying because of this relentless monster, yet even those who are no longer with us, persevered unto the end. They are my heroes.
Duchenne boys face the impossible every second of every minute of every hour. They defy it without hesitation because there was no other option to begin with. Forced into a life of adversity, they engage this psychological war with great authority, striving to be more than simply men. Here are ten reason why the Duchenne boy is, in fact, a born superhero:
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He continues alone, strong and unwavering. Starting at a very young age, he already must battle the unknown, with parents afraid to reveal what makes him different from everyone else. He endlessly fights with an ideal that someday, things will get better, with genuine hope.
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Whenever he falls or has a hard time, he keeps it to himself to not worry his family. He deals and finds solutions, returning to his feet with even more determination… a genius problem solver and inventor in learning.
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Despite facing muscle deterioration from the get-go, he endures constant mockery from children who don’t understand. He goes home to his toys and plays by himself. His imagination is capable of conjuring the most beautiful universes.
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Decisions become tougher as the progression gains momentum. With great maturity, his fearlessness shines through. He looks at his life, along with the pros and cons, and stands firm on his choice, because it’s what needs to happen.
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The Duchenne boy carries the weight of the world upon his shoulders. Loneliness motivates him to develop a sense of emotional independence. He is resourceful in every aspect and keeps his sanity intact, standing tall, even while the world is crumbling before his eyes.
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Amid an atmosphere of perpetual loss, he struggles with overcoming the urge for bitterness. He eventually wins to find gratitude in every ability he owns, and finds appreciation for even the most basic things, like a breath of air.
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He never gives in to the symptoms and defends each of his abilities unto the end. He requires no physical dignity because true dignity will always be in his heart. He believes there is a destination and keeps going, regardless of circumstance. Yet, above all else, he is strong enough to let go when the time is right.
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He is a lone soldier in every sense. The mind is his most powerful weapon. He is responsible for all his care and knows every little detail. He is disciplined according to his routines and restrictions because caring for himself is also caring for his loved ones. He is a self-made fountain of knowledge.
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No matter how much the weakness prevails, he is still able to draw energy from the negative to get through the day. He encourages himself and harnesses his anger to not only overcome, but walk through the fire, without hesitation.
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While there are no vacations, the Duchenne boy is confronted more than ever in the withering sands of time. He ultimately faces the final frontier: death. He remains fearless, not for himself, but the sake of his family. However much pain he might be going through, they never fail to be his number one priority.
There are times when things simply happen and Duchenne boys understand that the world owes them nothing. Without special powers, only weaknesses, they withstand every obstacle, unafraid, to create their own strengths. Superheroes exist, I know it for sure.
I just stumbled upon your blog. I have a younger brother with Duchenne who is turning 37 years old in October! 🙂
My son, who is 10, has Duchenne and my older brother had it, unfortunately my brother was taken by it 30 years ago. Your younger brother is an inspiration to me, I am glad I saw your comment, it is very inspirational to me. Thank you!
I love this, thank you! My brother had DMD and he passed when he was 19, 30 years ago. Now my son has it, he is 10 and an amazing little boy! Both my brother and my son are my superhero’s!! I have faith and Christy’s comment about her younger brother is really inspiring, he beat the odds and it’s a good feeling to know that the odds are beatable!
Ricky, excellent post. Our son, Paul, is 45 with Duchenne Muscular Dystrophy. Like you he’s on a vent, been on one since 1990. He can move only one index finder and his thumb on his right hand, but he works to help other with disabilities on the family websites, http://www.accessiblevirginia.org and www. travelguides.org. Paul is our super hero.
Wow, this is a great post. I’m very happy I found it on Facebook. Thank you for posting this. Very inspiring to me. My name is Dylan Thompson. I have Duchenne and I will be 22 in October. It is amazing that people are living longer with this disease than ever before. It gives me tremendous hope for my future. I hope I can live as long as a lot of these boys. Ricky, I would to talk and get to know each other. My email is suprdyl@gmail.com
Nice job Dylan. I Love you my precious young man.
Anyone who is determined as you my dear friend Ricky And fights through Dmd and comments by silly little people, and flies through to tell other young and older people how much they mean while teaching them things about themselves and this needless horrible disease with suck knowledgable and courageous words and st even using humor and wisdom beyond most people I know is my hero and many other peoples superhero. They do exist because you are the definition of one ?? hugs prayer no matter what happens luv you your an endless friend hugggggs
Thank you Ricky! You give me great hope. My grandson Steven has Duchenne. He is the love of my life. Steven will be 8 on Sept.14th.
Thank you for posting that! Not a lot of people realize what you guys go through! My brother is now 31 with DMD and on a ventilator. We almost lost him at 26 but with the grace of God he wasn’t done here and 5 years later he continues to fight! He plays wheelchair hockey and loves every minute of it! And I get to watch my 2 sons interact with their Uncle Brian! Good luck to you and keep fighting ?
Thanks for your post. We lost our son 3 years ago to complications due to DMD, and my 2 nephews, who died 3 days apart from each other, a year and a half ago. Your post was spot on! We miss them every day. Our son Todd was 26, My nephews, Kent was 31, Tom was 28. Todd had HOPE every day!!