Patient Stories

MY JOURNEY WITH SEVERE SCOLIOSIS

I was thirteen when I was diagnosed with severe scoliosis. Wearing a brace wasn’t even an option for me.  The only thing I could do was have surgery, and I’ll never forget what it felt like when I discovered that this would be the only way to fix my condition.

I had been complaining about my back pain for a few months, but it wasn’t until my grandma was rubbing my back that we noticed an incredible hump around my lower back.  I’ve always been long and lanky, but my body had never been something that I was self-conscious about.  Now, I had a hump in my back, and I’d noticed that my waist was no longer symmetrical.  We were clueless.  We had no idea what was wrong with me. I was terrified, and I was worried.  I felt like I had some unknown disease, but I also had this feeling of hope.  I knew that whatever it was, I would be okay.

The s-shaped curve became apparent in less than six months, a rare case never seen by my pediatrician before; that is until I came into the doctor’s office the following day to find out what was wrong with me.  I didn’t know what to expect.  My pediatrician referred me to an orthopedic surgeon, a little miracle worker named Dr. Shufflebarger at Miami Children’s Hospital.

On April 2^nd, 2013, one week after spring break, I had spinal fusion surgery.  I spent seven days in the hospital and missed a month of my last year of middle school in order to recover.  Recovery was the hardest part of my journey with scoliosis.  Being forced to leave all of my responsibilities behind drove me crazy!  I went from always being productive to feeling helpless and being homeschooled from my bed.  The recovery process didn’t allow me to go on rollercoasters for a year, so I missed out on memories with my graduating class when they went on their trip to a theme park, but I returned to school in May and delivered the class speech at my 8^th grade graduation as previously planned.  This was the first time after surgery that I realized that even though I had sacrificed being my usual active self, it was all going to be worth it.  I would be healthy again, and for that I felt blessed.

Just one and a half months after my surgery, I flew to New York City to attend my brother’s graduation.  New York is my favorite place in the entire world, and when I stepped foot in the concrete jungle, I had completely forgotten that I had been lying in a hospital bed just weeks prior.  I was already climbing flights of stairs in the Subway, walking through Central Park, and experiencing life to the fullest again. I’ve always known that New York was a magical city, but this was when I truly realized it.  I still felt pain, but nowhere near the pain I had felt prior to the surgery. I know that the recovery process is different for everyone, and it’s hard, but if I could do it, then so can you!

It’s been over two years since my surgery.  As of now, I’ve ridden tons of rollercoasters and been to New York City several more times.  I’ve begun learning how to code, was elected Vice President of my high school class, became a part of my school’s badminton and bowling teams, and participated in all other “normal” teenage things.  I’m even the founder & CEO of my own business!  This surgery has made me more confident than ever! I’ve learned to embrace all of my imperfections, because they’re a part of who I am.  Scoliosis is part of who I am, but I won’t let it define me.  Don’t let scoliosis stop you from following your dreams.  I didn’t.  At just sixteen years old, I’m currently signed with two famous modeling agencies in New York & Miami.  I had dreamt of becoming a model since I was eight years old.  Who knew being long and lanky would come in handy?  I have a nine inch scar along the middle of my back, and honestly, I think it’s pretty cool!  It sets me apart from everyone else.

If there’s one thing I’ve learned about working in the fashion industry, it’s that being unique gets you far.  Makeup can cover up these imperfections, but if makeup didn’t exist, I’d still be proud to walk the runways with my scar totally exposed.  Beauty isn’t about looking perfect. It’s about being confident.  Believe it or not, my epic journey with scoliosis gave me an incredible sense of pride.  To help others feel the same sense of pride, I also created a fashion and lifestyle blog where I write about my personal experiences in the industry and the obstacles I’ve had to overcome.

I have so many more goals that I’m working hard to accomplish every single day.  I never stopped believing in my dreams, not even when the doctor diagnosed me with severe scoliosis.  As a result of my abrupt scoliosis, my pediatrician now gives scoliosis check-ups every three months instead of every six months.  It feels pretty great knowing that my case now prevents other kids from going through this little bump in the road.

I feel so blessed to have had such an incredible support system throughout this entire process.  Having family and friends by my side played a huge role during my recovery.  I’m so thankful for my doctor, nurses, and the caring staff at Miami Children’s Hospital for giving me another chance to feel confident with my body.  I truly believe that the most important thing you can do during times like these is value yourself, believe in your worth, and know that one day all your dreams can become a reality.  Don’t be scared to face scoliosis, and don’t be scared to follow your dreams.  You can get through this!  No medical condition, such as scoliosis, should ever stop you from achieving greatness!

When my grandma first found the hump in my back, I knew that, in the end, I would be okay.  In reality, I was better than okay.  I was able to overcome more obstacles than most teens my age.  The journey is part of who I am now, and I am proud of that person.  Not many people know that I went through this, but it’s something I’m proudly sharing with you because I know that you can get through it too!