Editor’s Note: Courage to Shine™ Team Members first came across Leonard at a conference in 2009, and we were so impressed with Leonard that we are so honored to have the chance to present Leonard Newton’s story here on Courage to Shine™ .
“You may knock me down, but I will never fall”
By Leonard H. Newton Jr.
My name is Leonard H. Newton Jr. I am a nine time karate champion, a college athlete, an MVP baseball player, an audio engineer and now a recording artist. In addition to these accomplishments, I am a 34 year old bladder exstrophy patient and I would like to share my story with you.
I was born in 1978, a time when most doctors and hospitals had never seen or even heard of a bladder exstrophy. This birth defect can be one of the most miserable and mentally challenging conditions anyone could have. I’ve had thousands of procedures and more surgeries then I care to remember. There was a time in my life when being in the hospital was more common than being at home. Even so, it was going to take more than that to keep me from getting everything out of life that I dreamed
Some of the procedures and surgeries I went through at an early age were new and experimental. My life began as a challenge and I was given many limitations and restrictions by my doctors.
I was still determined to not let anything stand in my way. I knew I was different from the other kids and knew I had to work and try even harder to accomplish the goals I had for my life. With every accomplishment that some thought might be impossible, I’d keep going. I was determined to show that no matter what condition or birth defect you are born with, you could still do special things with your life. The condition itself doesn’t put limitations on you, only you can do that. I never wanted any handouts or special treatment from anyone. I only wanted to be treated like the other kids, so I never told anyone about my condition. I just knew I’d have to work a lot harder to accomplish the goals I set for myself.
I was hooked on three things growing up- baseball, karate & music. Two of the three, karate and baseball, weren’t highly recommended because of the physical requirements- that only made me want to do those more. Karate was the biggest worry for my parents. So much so that I fought in dozens of tournaments and my mom couldn’t watch a single one in person. My dad would video tape all of my fights and she’d watch them once my dad and I returned home and she knew I was safe. I knew the type of fighting I would eventually get into was a big risk. The only assurance I could offer my parents was to tell them that I had to be better than everyone else, because I knew what could happen if I wasn’t I would go on to have 164 fights, winning 163 of them. I brought home 9 karate championships and a lot of videos for my mom to watch.
Baseball was my first love and true passion in life. I played each game extremely hard and played like it could be my last. With every dive across the infield and line drive off of my stomach, I knew my parents cringed. But, they also knew I was doing what I loved. I was chasing dreams and exceeding all expectations. If I had to stop a ball with my face, I’d do it just to get the out. That is how hard I played the game. I had big dreams of conquering all odds and earning the right to play on at least one professional baseball field. I wanted this not only to prove to myself that all dreams are possible but also to show my parents, my family and all kids born with a birth defect that no dream is ever too big. I would go on to be an MVP baseball player and was elected to multiple all-star teams. While playing in college I was being looked at by a few Major League Baseball scouts.
But the memory I hold closest to my heart is when I earned the right to play a game on a professional baseball field. But, it wasn’t the game that day that I remember the most, it was before the game when I was able to invite my dad out onto the field and play catch with him. There I was, a kid that had so many medical issues standing on a dream, playing catch with the man who taught me the game.
I was always extremely proud of what I had accomplished in karate and baseball, but was still searching for a way to connect to other people struggling with bladder exstrophy and other disabilities. Since I chose to hide my condition my entire baseball and karate career, I never got to reach out to the people I truly wanted to help. But, that would all change with the one thing I always considered just a hobby.
Throughout my life, I constantly write my thoughts and feelings down on paper. This is my way of dealing with my emotions privately. I wrote when I was struggling to deal with the everyday physical and mental pain of living with a bladder exstrophy. I wrote while in the hospital before and after surgeries. I wrote a few hours after I almost died from a surgery in 1998. I wrote when I just couldn’t take life anymore and felt like I didn’t want to live. Many
years later these writings would become the lyrics to a lot of the songs I sing with my band, XSTROPHY. I took all of my most emotional and private thoughts and put them out there to help others deal with their pain. Through music I am finally able to share the struggles, pain and torture of dealing with a birth defect with the people I have always wanted to help. I’ve been able to share the stage with some of my biggest musical influences and my words have reached the ears of many exstrophy patients, parents and others with birth defects and disabilities. I get texts, emails and messages almost every day from people around the world. A lot of kids and teenagers seek my advice on how to deal with the everyday challenges and the mental burden of living with this condition. Many people also seek advice on how different surgeries have affected my life and how it may affect theirs. The most emotional and meaningful messages that I receive are from the parents and patients. They thank me for turning such an adversity into something wonderful. They tell me how much of an inspiration I’ve been to them and their child. They’ve listened to my songs and have seen me onstage doing what I love to do, and that’s had a big influence on them. They’ve started to realize that this condition isn’t the end of their lives and that it’s ok for them to dream again. To me, that is worth more than any accolade I’ve ever received, or will ever receive.
“You may knock me down, but I will never fall” – Leonard Newton Jr.
Xstrophy is releasing their full length album “My Tortured Past” on April 27, 2013 in Pittsburgh, PA at Club Diesel. If any bladder exstrophy patients or family members would like to attend the show, just message Leonard on facebook and he’ll send you free tickets. In addition, all exstrophy patients and family members will receive a free cd at the show.
Read more about Leonard in the media below:
Preview: Rare medical condition doesn’t stop Xstrophy frontman Leonard Newton Jr – Pittsburgh Post-Gazette – Pittsburgh, PA – April 25 2013
- Xstrophy’s website: www.xstrophy.com – See tour dates, videos, photos and you can purchase tickets, t-shirts, stickers, picks and the new CD – “My Tortured Past” (available April 27th)
- Facebook: www.facebook.com/xstrophy
- Facebook Fan Page: www.facebook.com/xstrophyofficial – Like Page
- Xstrophy YouTube Site: www.youtube.com/xstrophy
- Reverbnation: www.reverbnation.com/xstrophy
- twitter – @xstrophy
Leonard’s Facebook – www.facebook.com/xstrophy21
Leonard’s Twitter – @xstrophy21
© 2013 Leonard H. Newton Jr. & Courage to Shine™