The student news site of Webster Thomas High School

Webster Thomas Courier

Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’

'Just talking can take us a long way, and one day we hope that a cure will be found. But until then, we just try to live like everyone else.'

Ryan+Tubiolo+says+those+with+DMD+should+never+give+up.
Ryan Tubiolo says those with DMD should never give up.

Ryan Tubiolo says those with DMD should never give up.

Staff

Staff

Ryan Tubiolo says those with DMD should never give up.

Hang on for a minute...we're trying to find some more stories you might like.


Email This Story






Greeted by a sea of green.

Catherine Osadciw
Greeted by a sea of green.

The Journalism class recently interviewed Ryan Tubiolo, a Junior who was diagnosed with Duchenne Muscular Dystrophy (DMD) as a child.  Students who were here last school year may remember the early March day when the entire school greeted Ryan.  Students, teachers, staff, and administrators dressed in light, bright green “Losing is Not an Option” T-shirts to meet him as he arrived at school; he had spent more than a month away because of a back operation.   

The goal of the interview was to go beyond that day of support and to get to know and understand Ryan better.  Ryan had also decided to write his own story, so another objective was to help him figure out what readers might want to know.  

Since DMD is a disease that progresses, the things that Ryan could do just like anyone else are now a struggle. He now uses an electric wheelchair to travel and has the inability to write.

Even though Ryan cannot do many things for himself any more, he still says that he “got the easiest of it” because “it’s worse for for a lot of kids”; many people with DMD also have to deal with heart conditions, breathing problems and the inability to speak. He is also grateful that he has his father and mother and his brother, Nicholas Tubiolo, to help him.

“I still look at myself as a normal teenager and try to forget that I have this disease,” Ryan says. He wants to be treated as any other teen would be treated, he says.  Ideally, he would like to be treated as his friends treat him.  “Most of my friends treat me the same” as they would treat anyone, he told the class. “They couldn’t care less that I can’t walk.”  

Ryan expressed his gratitude for the day when everyone at Webster Thomas came out to welcome him back.  Not only did it feel great, it also brought attention to the disease, he says.  But since Ryan’s goal is to become an author, we’ll let him take the story from here…

— Kathryn Hobbs and other Journalism Class Contributors.

It was easy to remember my childhood, as it was very eventful and entertaining…all the baseball games in 90 degree weather; summer parties in the back yard with a very small inflatable pool, and even the several dogs we had, one after another.

All this being said, the Tubiolo family wasn’t normal. My brother and I are 17 and 18, respectively. Back in my early childhood, I had a lot of friends, and I felt that I fit in because they thought of me and treated me as if I was just like them.  Later I found out that, from a physical perspective, I wasn’t just like them.

Why wouldn’t I fit in? Why couldn’t I fit in? Over time, as my physical ability declined, I couldn’t participate in activities, and no one knew why this was. No one, not even my parents, really thought much of this because this decline happened just a little bit at a time, over time. Then, there was that one day that I remember clearer than any other day of my childhood.

I don’t know exactly what I was doing that day, but I remember the phone call. Maybe my mom was helping me in the bath, or maybe we were playing with our puppy; I’m not sure. The phone rang a few times, and my dad finally picked it up. The rest of the day was mostly unclear — the car ride, the doctor’s office, the look of complete grief on my mom’s face as the doctor explained to them what was wrong. Not until later did I learn what it was, but the day has stuck with me and most likely will for the rest of my life.

Since that day, my life, and the lives of all my family members were flipped completely upside down. The disease they diagnosed me with was called Duchenne Muscular Dystrophy, and I was one of many in my area to be diagnosed. I remember the look of confusion on my parents’ faces; it was as if they were just asking, “Why? Why is this happening to us?” That’s the one question that haunted my family the most.  

Over time, we learned how to treat it, how to live with it, and most importantly, how to advocate for it. Not many people know of this disease. My family didn’t know about it until I was diagnosed The most basic way to explain DMD is this: The chromosome that contains the protein dystrophin, which makes up our muscles and helps our muscles fiber strength, is missing. Most kids are born with the chromosome to produce large enough amounts of dystrophin, which allows their muscles to grow at the normal rate. Kids like me don’t get so lucky.

For us, the process of building muscles is backward, almost.  The disease takes away our ability to walk, our strength, and our ability to do everyday tasks on our own. We start with stronger muscles, but, over time, the lack of dystrophin really damages our bodies, and this can make life stressful.

There was a time, very long ago, when people with physical disabilities were often turned down from society, laughed at, and discriminated against. Life with DMD is certainly much easier than it used to be, as long as parents are willing to help do anything they can to make the lives of their children as easy as possible, and as long as children and parents are determined to tackle this disease head on, not letting it slow anyone down.

However, as you can imagine, life with this disease — without any love or support — can be almost unlivable. During more unenlightened times, that was the case.  Back then, not many kids saw themselves living past their teens years, because nobody was willing to help, and nobody wanted to help. That’s why advocating for all types of disabilities, mental and physical, is important. Looking at how kids with special needs used to live, is motivation in itself to change how these people live now. There’s been great progress in teaching everyone about these diseases, which also leads to great strides in medical research.

There’s currently no cure for DMD, but there are cures for many other diseases, which means we’re definitely on the right track. Based on where knowledge of physical disabilities used to be, we can say that we know more today and that society’s attitudes have certainly improved. As horrible as I may have made this disease sound, it is for sure something you can live through, with the right people and the right care.

The one thing my dad has always taught me, no matter how hard my life can get, is to never give up. As a younger child, I loved watching WWE wrestling, and the motto of my favorite wrestler was, “Never give up.”  I’ve always been inspired by this motto and used this to my advantage. I never gave up, and my message to anyone else with any disability at all, is to do the same as me:  Try your best to never give up. The more we say this — “never give up” — the more people will learn how strong we can be. My message to everyone with disabilities, especially parents with young children,  is to talk about this as much as possible, until everyone knows about it.

Just talking can take us a long way, and one day we hope that a cure will be found. But until then, we just try to live like everyone else.  Most of the time, we succeed in this. We really aren’t much different — only in appearance — from others, but we never let this change how we live.

Don’t give up.  And don’t forget.

Print Friendly, PDF & Email

13 Comments

13 Responses to “Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’”

  1. Elaine Heveron on November 17th, 2016 5:36 pm

    Hi Ryan, My sister, Mary Heveron-Smith shared this article with me. This is an extraordinarily well-written and inspiring piece of writing We all have some kind of disabilities, but you have shown us acceptance, grace, strength. I wish you and you family and friends continued support and many many blessings. Elaine Heveron

    [Reply]

  2. Kevin Tubiolo on November 18th, 2016 11:21 pm

    I don’t know if I’ve ever been prouder of my son and I am after reading this. Despite with this disease has done to him and to our family, he has more strength and courage than I could have ever dreamed to have myself. Ryan, you never cease to amaze me. You are an amazing and inspirational young man. I’m very proud to be your Father. You and your brother have made me the happiest man in the world, and the proudest.
    Thank you Son

    Dad

    [Reply]

  3. Rita DeCann on November 18th, 2016 11:44 pm

    Ryan you are one amazing young man. May you continue to amaze everyone that hears your story and may you live to be a very old happy man. God bless you and continue to amaze us all.

    [Reply]

  4. Chaney Roko on November 18th, 2016 11:44 pm

    Thank you for your message. “Never give up.” I hope it goes far and wide!

    [Reply]

  5. Kelly Hill on November 19th, 2016 8:30 am

    Ryan, thank you for sharing your story with all of us, for your story might be the one reminder in a child’s or an adult’s life that reminds him/her to never give up! Your well-written, authentic piece evoked such emotion that I found myself responding to your story as a read it. This is what great writers do; your dream of becoming a writer is now a reality! Thank you for sharing your gift with us. Mrs. Hill

    [Reply]

  6. Rita DeCann on November 19th, 2016 10:05 am

    You are one amazing young man with the greatest dad in the world. May God bless you and your family as you continue to amaze everyone.

    [Reply]

  7. David Curtiss on November 19th, 2016 4:15 pm

    As you know, your dad and my son are lifelong friends. I have been a Ryan follower for many years. Everyday when I look at FB I look for the latest Tubiolo post, and quite simply, you never cease to amaze me. We won’t go into my issues but know this… you are an inspiration for me. When I watch you not just meet, but, beat your goals,i’m proud and uplifted, as well. The Tubiolo’s are a rare breed and each of you is a role model for the other. I feel honored to have been allowed to watch you plow ahead. I know you will never give up.

    [Reply]

  8. Pat Missell on November 19th, 2016 9:38 pm

    Dear Ryan,
    I read your article and I am so proud of you! You made it clear to anyone who reads it that having a disability does not mean you should give up.! You are an inspiration to so many of us..l also think you will be a great author. Keep writing!!!! God bless you and your wonderful father and brother
    Love Pat Missell

    [Reply]

  9. JAMES RAFFONE on November 20th, 2016 6:41 am

    Ryan,
    I am a father of a 7 year old boy with Duchenne. I share the same motto, “never give up”. I’very been fighting Duchenne since 2013, since my James was diagnosed, as you and your family prior to that we didn’t know of Duchenne.

    I promise you I will never give up fighting this disease. Please take a look at our website. I’don’tover it if you could shed some light on the personal issues from your prospective. Also, for you to see how much another family shares your desire to find a cure.

    If there is anything you need or want..please feel free to reach out to me.

    Sincerely,
    Jim Raffone

    [Reply]

  10. Jay Keller on November 20th, 2016 9:32 am

    Very well written sir. Everything you’ve said hits home, as my son also has Duchenne. His attitude, like yours, is never give up. I know from many years of watching and learning just how difficult that can be. I also understand just how important it is.

    Carry on my friend. God bless you.

    Jay in Green Bay

    [Reply]

  11. Margaret (Maggie) Platner on November 21st, 2016 10:49 am

    Hi Ryan, Your Sissy shared this article with me. I have to admit that I was not really sure where the disease developed within the body. I now understand it much more. Thank you so much for sharing this with all of us. You are truly an inspiration to others. And your Sissy is so proud of you. She has spoken of both you and your brother on numerous occasions. You both are the apple of her eye, so to speak. I look forward to reading more of your articles on your progress and other insights you may have on life in general. And, as you say “Never give up”. Margaret Platner (good friend of J.J.)

    [Reply]

  12. Deborah E Potter on March 6th, 2017 7:36 pm

    Ryan,

    This article was so well written! It was informative and inspiring all at the same time. Thank you for that! Keep up the great work!

    Mrs. Potter

    [Reply]

  13. Don and Nancy Wright on May 21st, 2017 9:51 am

    Hi Ryan,
    We are so thankful for who you are–a gift to so many!! We just saw this article in the last few days. Don and your grandfather used to work at the same company many years ago–3M. We thank you so much for sharing your thoughts so openly.
    It sounds like you have a great amount of support at school and we know you have a wonderful family. You are a brave and wonderful young man!! Your motto is so important, “Never Give Up.”
    Blessings,
    Don and Nancy Wright (Jared Wright’s grandparents)
    PS: What cool T-shirts your school wore to welcome you back “Losing is Not an Option” and you area winner!

    [Reply]

While we welcome discussion of our articles, we ask that all comments be appropriate for family reading.

If you want a picture to show with your comment, go get a gravatar.




Navigate Right
Navigate Left
  • Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’

    Entertainment

    ‘It’: Characters are complex, realistic, and worth caring about

  • Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’

    Features

    Why I run: It’s all about the people

  • Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’

    News

    Webster Thomas Courier wins ‘gold’ in statewide competition for ‘Best All-Round Publication’

  • Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’

    Features

    The life of the Webster Thomas principal: Striving to get the blend just right

  • Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’

    Entertainment

    Power metal: fast, uplifting, but often overlooked

  • Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’

    Entertainment

    A Midsummer Night’s Dream: Crazy love, laughs, and a fast pace

  • Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’

    Features

    Images of Spirit Week 2017

  • Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’

    Entertainment

    New version of NBA video game: Is it worth it?

  • Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’

    Features

    Words of wisdom from seniors

  • Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’

    Features

    Featured student: Morgan Seemann

Skip to toolbar
The student news site of Webster Thomas High School
Ryan Tubiolo on living with Duchenne Muscular Dystrophy: ‘Never give up’