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Patient Stories

Izzy Kessler

Izzy Kessler, now 20 years old, was born with Cerebral Palsy. In 8th grade, her scoliosis became so severe that surgery was necessary. Dr. Sponseller performed Izzy’s surgery at John Hopkins in Baltimore and was able to completely straighten her spine and give her perfect posture!

Izzy is an athlete, a high school graduate, a coach, and a mentor who began her athletic career early, excelling in bocce and swimming. In high school, she was the captain of the Bethesda Chevy Chase High School Varsity Co-ed Bocce Team, which won the Maryland State Championship. She now coaches that team and competes with the National Rehabilitation Hospital’s adaptive rowing program. She also volunteers two days a week at the hospital to mentor inpatient pediatric patients.

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Isebel Holmes

Isabel was born prematurely at twenty-nine weeks and was later  diagnosis with Cerebral Palsy.  She has been under the care of Dr. Mark Abel since 2001.  As Isabel continued to grow, her spine curvature did too, and soon it was causing her discomfort and negatively impacting her quality of life. Isabel had to have multiple surgeries to fix both kyphotic and lordotic curves in her back, but after six months of recovery time, Isabel’s family was able to see astonishing improvements in Isabel’s daily life.  Her pain has lessened, her sleep has improved, she is able to take less medicine, and she can face forward to see who she is interacting with.  Also, due to Isabel’s increased lung capacity, her speech has improved, and her parents are able to hear her say things that she couldn’t before.  The Holmes are very happy with Isabel’s spinal surgery.

“We are so grateful to see these changes in her life.  I think we got excellent guidance as well as surgical expertise and care.  Thank you, Mark Abel.  We owe you so many thanks for your help in bringing back Isabel’s smile.”                     — Penny Holmes

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Helena Roberts

Diagnosed with scoliosis at age eleven, I was quite unaware of the long journey I had ahead of me. At the time, the only setback my condition presented was the necessity of wearing a back brace during sleep. I continued with my daily activities as normal and felt just as able as any other dancer in my ballet class. However, as the years progressed, the effects of my scoliosis became increasingly noticeable. Inflicted with an “S” shaped curve, I suffered from not only a peculiar looking torso, but also immense discomfort. It seemed that with every visit to the doctor, the degree of my curves worsened, and the plausibility of surgery increased significantly. I tightened the straps of my brace and prayed that I would be spared the inevitability of surgery, so that I could continue pursuing my passion for ballet.

Five years after my diagnosis, I realized that the daily back pain and constant discomfort were too great for me to not take further action. Reluctantly, I decided to undergo surgery. Considering all things, but especially aware of my love for ballet, this was not an easy decision. However, it is one that I will never regret.

Two rods and twenty-two screws later, the curves of my spine decreased considerably. Though post-op life certainly proposed a difficult challenge, I recovered nicely with the support of my family and friends. Day by day, I regained strength and worked my way up to performing daily activities again. Making sure not to bend or twist too much, I returned to school and continued on as normal. After waiting six months for my spine to properly fuse, Dr. Shufflebarger released me of any restrictions, signifying that I was finally healed enough to return to ballet.

In my battle with scoliosis, I successfully conquered my condition. Only nine months after having surgery, I performed in the ballet, Sleeping Beauty, as if I had never undergone surgery. Despite my previous doubts, I am amazed with my current levels of mobility and flexibility. Additionally, I gained about two inches in height and near perfect posture after the procedure. Having surgery was undeniably the right decision for me. Today, still less than a year after surgery, I rarely experience any back pain and continue to grow stronger every day.

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Eve Moll

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Haley Gelberg

During the same visit that I got my scoliosis diagnosis, I also learned I needed surgery. It was shocking, scary, and confusing, but my favorite quote which got me through not only my scoliosis experience but changing schools, applying to college, and fighting for the starting goalie position was: “You’re braver than you believe, and stronger than you seem, and smarter than you think.”

Haley’s curve was at 62 degrees by the time she had surgery, but it seems as if her drive, her determination, and her commitment to being great at absolutely everything she does never let her slow down. She has always kept moving forward. Perhaps because she’s braver than she ever believed, stronger than she ever seemed, and smarter than she ever thought! This Scoliosis Star shines brightly!

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Gabriella Gimber

On May 17th, 2010, when I was fourteen years old, I underwent a spinal fusion. My spinal fusion was performed by Dr. Peter Newton at Rady Children’s Hospital in San Diego, California. At the time of my surgery, I had a sixty degree right thoracic curve that was only going to continue to get worse. Having a surgery was scary, but the thought of living a life of disfigurement, back pain, and physical limitation was scarier. That’s why I decided to have the surgery.

After my surgery, I was given a squishy heart-shaped pillow from a girl named McKenna Keyes. McKeena had the same scoliosis surgery I had, only she had hers two years before I had mine. Before McKeena’s hospital stay, she had been given a pillow as a gift, and that pillow had brought her so much comfort that she wanted to share that with others. So McKeena began giving out heart-shaped pillows to other scoliosis patients undergoing spinal fusions. When McKeena left for college, I decided to continue her work, and I began providing pink heart-shaped pillows, information, and emotional support to teenager girls who are preparing for spinal surgery like I did.

I spent six days in the hospital, and although my surgery and recovery were probably the hardest things I have ever been through in my life, I succeeded. I made it through both experiences, and I am now stronger than ever! I wanted to share my story to remind each of you that, as you go through your scoliosis treatment, you are not alone! I want offer others heart-shaped pillows to remind them that they have nothing but love and good wishes being sent to them. A heart-shaped pillow may seem like a small thing, but mine reminded me that I was not alone and that others cared about what I was going through. My pillow gave me physical comfort and emotional support. In fact, I still sleep with my pillow today!

If you’re faced with surgery and feel afraid, know that you can do it! You can reach the end of your scoliosis journey stronger and happier than ever!

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Emm Arruda

Emm Arruda’s exciting new partnership with Setting Scoliosis Straight comes at the peak of June Scoliosis Awareness month and on the heels of being named Sephora Fresh Face of the Year by Canadian Arts and Fashion Awards (CAFA)!

Emm is doing more than spreading global awareness about scoliosis–a cause that has been severely underrepresented. She is flipping a stereotype on its head and challenging what it means to be beautiful and perfect as she climbs to the top of one of the most critical and competitive industries in the world. She’s confident, authentic, and unapologetically brave, and we couldn’t be more proud of her!

There is no question of the positive impact Emm will have for young girls and boys with scoliosis. Her ability to not only embrace her scar, but proudly show it off is a reminder to us all to live boldly. We hope young people with scoliosis will instantly see themselves in her and be inspired by her story.

“The last year and a half has been an absolute whirlwind for me and my family. Being so closely effected by scoliosis, this partnership with Setting Scoliosis Straight means the world to me. I’m so proud to be creating awareness for scoliosis and inspiring others to always follow their dreams, and that anything is possible.”

 

Emm’s Scoliosis Story

Bionic woman, rising star, model citizen…

Emm Arruda, only 16 years old when she was launched into a bustling modeling career, is redefining the ideals of beauty in one of world’s hardest businesses to crack, the fashion industry.

It’s hard enough for a model to make it out there, never mind if she has a 15-inch scar down her back. This was the case for the now 17-year-old Ontario native who made her modeling debut at New York Fashion Week in September 2016.

“I always thought it was something I would never do because of my body being all out of shape,” she says of the S-curve her back took on caused by scoliosis. “Even after the surgery, when people mentioned modeling to me, it seemed impossible.”

Emm Arruda was diagnosed with scoliosis at just 15, and opted for spinal fusion corrective surgery at SickKids Hospital in Toronto. After having two titanium rods and over 20 screws placed in her back to straighten the spine, Emm had a long but successful recovery which resulted in a two-inch height increase and close to perfect posture.

“It definitely used to bother me. Especially at the time, going through it, my body was in all kinds of crazy shapes,” says Emm. “Once it was fixed I struggled a little emotionally with the scar. But I 100% embrace it now. I’ve learned that it’s beautiful… to be comfortable in your own skin and to be yourself.”

Shortly after her surgery, her mother’s friend sent photos of Emm to one of Canada’s leading model management agencies, Chantale Nadeau Model Placement, where she was signed right away. While some modeling agencies may have viewed her scar as a setback, Chantale describes Emm as an “incredible bionic woman with better posture than anyone she’s ever known”.

Since then she has flown all around the world working for some of the biggest fashion houses including Chanel, Christian Dior, Louis Vuitton, Valentino, Céline, Alexander McQueen, among many others.

Emm’s life sounds like it was plucked right out of a book. And although her success story and incredibly adventurous life is fascinating, what we admire most about Emm is how humble and down to earth she is. During an interview with Novella magazine, Emm was asked to name something she couldn’t live without. Her answer, “the love and support of my family and friends; they mean everything to me.” Yes, she really is that cool.

 


Watch a video of Emm Arruda speaking at our 2019 Power Over Scoliosis Event!
Skip to 7 minute mark to listen to Emm’s talk.
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Emily Bloomfield

In 2010, I was thirteen years old and in the eighth grade. My life was going smoothly until I played a field hockey game one day after school. During the game, I twisted my knee, and as a result, I had to see an orthopedist. Surprisingly, the doctor was unable to find anything wrong with my knee, but he did find a problem with my back. I was referred to a specialist, and I had x-rays of my back taken at the Spine Center at Nemours A.I. DuPont Hospital for Children. During my appointment, Dr. Shah informed me that I had idiopathic scoliosis, which is an abnormal curvature of the spine that occurs with no known cause. Dr. Shah explained that I had two curves, and I could clearly see from the x-ray that my spine resembled a backwards “S.” My curves were fifty-seven and fifty-five degrees, and this meant that a spinal fusion surgery would be the best option for my future health. After finding out that I needed to have spine surgery, my everyday life suddenly came to a screeching halt.

Once my parents and I made the decision to move forward with the procedure, the next few months were filled with the impending surgery and recovery as my only focus. It seemed to be all I could think about. My uncertainty and fear consumed me, and I began to imagine all of the worst possible outcomes. Fortunately, my parents were there for me every step of the way. They reassured me again and again that I was in a very capable surgeon’s hands and that they would be there for me through every part of my hospital stay and recovery. On the morning of my surgery, I was incredibly anxious, but once I talked to Dr. Shah and the nurses, I felt I could handle what was coming.

Both my hospital stay and my recovery were really tough. The nurses at Nemours were awesome, and they did their best to keep me comfortable, but the physical therapy was especially difficult. Still, I pushed myself every day while I was in the hospital. During my recovery time at home, I became slightly frustrated. I couldn’t do most things for myself, but my parents and my grandmothers helped me with everything that I needed. I was out of school for quite a while, but my friends were really supportive. They took time out of their school days to write me cards and letters, and they brought me small gifts and snacks to get me through my long days at home. Without the love and support of my family, my friends, and my teachers, I don’t think I would have made it through my recovery. However, I had tons of support, and I made it through.

My spinal fusion helped me grow into a bigger person, mentally and physically—I gained over two inches! Despite that fact that it was a long, emotional, and painful journey, I am glad I endured all of it. Without my surgery, I wouldn’t be the healthy individual I am today, and I wouldn’t be the healthy individual I’m going to become as I grow older. I truly value and appreciate Dr. Shah’s guidance and expertise. Being a participant in a scoliosis research study helps me feel connected to the Spine Center at A.I. DuPont, and it has motivated me to do more to help others who have scoliosis. As part of my senior project, I organized a fundraiser in my town to benefit the Setting Scoliosis Straight Foundation, and it was a great success. The fundraiser was my way of giving back to those who helped me through my scoliosis journey and helping future scoliosis patients.

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Elizabeth Conklin

Looking back now, I think I had the ultimate scoliosis experience, but when I was first diagnosed with scoliosis, during the summer before sixth grade, I had no idea what would be in store for me over the next eight years. I wore a brace sixteen hours a day for three years, and in those three years, wearing my brace produced positive results, so it was decided that I no longer had to wear it.

After four years of not wearing my brace, I began to see changes in the way my body looked. During my senior year of high school, I had a check-up. My doctor told me that my curves had dramatically increased from thirty-two and thirty-four degrees to fifty-two and fifty-one degrees. I even had a small eleven degree curve in my neck. All of this added together meant only one thing: spinal fusion surgery was necessary.

Even though I needed to have the surgery, the thought of a surgery was absolutely terrifying. My parents and I decided to postpone the surgery until after I finished my first year of college, but as I went through my first year of college, I became extremely self-conscious of the way my body looked. On top of my self-consciousness, the pain I felt in my ribs and hips was becoming unbearable. Although the idea of spinal fusion frightened me, I began to realize that it was the only way to change my life for the better.

My surgery lasted eight hours. When it was done, I had two rods and twenty-four screws in my spine, and I finally had a spine with minimal curves. Even more exciting than all of my new hardware and straightened spine, was that I grew two inches in the process!

At first, the recovery process was extremely difficult, both physically and emotionally. However, with the help of the amazing nurses at Nemours/Alfred I. DuPont Hospital for Children and my wonderful doctor, Dr. Shah, I was on my feet in no time! Once I got home from the hospital, my parents pushed me to be active and perform small tasks around the house to rebuild my strength. I did this every day, and it worked. I am so happy that my parents drove me to get up and keep moving, because it really did speed up my recovery. It only took six weeks before I was able to go back to work as a camp counselor, where I spent my days chasing after eight year olds, and after seven months, I was able to snowboard again as if I didn’t even have two titanium rods in my back! To mark my one year post-op anniversary, I ran a ten-mile race with my dad by my side. Later that day, my family and I celebrated with an awesome cake that had pictures of my x-rays and scar on it!

I am so grateful for everyone who helped me throughout my journey with scoliosis. I can’t thank Dr. Shah enough for everything he has done for me! Having spinal fusion surgery was definitely the best decision I have ever made. Looking back on my long journey, I can honestly say that I wouldn’t change a single thing. I am proud to have conquered scoliosis, and I am proud every time I look at my scar because I am reminded of everything that I have overcome to get to where I am today. This scar on my back is mine, and I earned it!

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Deanne Vitiello

My journey started in 2007 at my very first appointment at Nemours/A.I. duPont Hospital for Children with Dr. Peter Gabos. I was thirteen years old and was told I had scoliosis. I could not even say that word out loud; it just felt weird. But, looking back, I had no idea my world would be changed and turned upside down in one of the most positive ways imaginable.

My spine was measuring two curves, both in the thirties. Over a two-year span of monitoring, starting from that day in 2007, my spine curved into the surgical range of over fifty degrees. Bracing was never an option due to my skeletal maturity and degree of curvature. So on June 28, 2010, I had spinal fusion surgery for my scoliosis. My two curves measured fifty-three and thirty-five degrees that day and after a five-hour surgery, I came out with two rods, eighteen screws, and a very straight spine.

I spent five days in the hospital learning how to adjust to a new life of having stainless steel rods and screws in my spine. It was absolutely one of the hardest things I ever went through. If it were not for the amazing team at duPont and the best surgeon ever, Dr. Gabos, visiting me twice a day every day, I would not have been able to get through it. I am fused from T4 to T12.

To make this story even better, I had the once in a lifetime opportunity to shadow Dr. Gabos for five months this past summer during an internship for college. I got to see firsthand how the same surgery I had was performed, and I was able to meet a lot of amazing patients who, like me, are going through their own scoliosis journey.

Scoliosis was the best thing that happened to me. Sounds crazy, right? I had the best surgeon anyone could have ever asked for, a straight spine, and a beautiful scar I am so proud to show off. Dr. Gabos forever changed my life, and I am truly indebted to him for that!

I really feel like the luckiest girl in the world after everything I went through because it shaped me into who I am now! Today, I am almost six years post-op, and I feel absolutely amazing!

The biggest piece of advice I could give anyone reading my story is TRUST. Trust your doctor and your support system, and know that everything will work out the way it is meant to be! It is not easy, but you will come out of it all a much stronger person than you already are. Believe me!

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