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In Their Own Words: Shriners Children’s Patients Share Their Experiences

Specialty care from Shriners Children's providers has helped millions of kids get back to the things they love, including Brandon, who has paralysis.

More than 1.5 million children from around the world have benefitted from the care they received at Shriners Children’s.

Whether they were treated for burns, musculoskeletal, orthopedic, craniofacial or other medical needs, these millions of children have been able to live fuller lives because of the care they received at Shriners Children’s.

Three patients have penned heartfelt reflections on their medical journeys and what Shriners Children’s means to them. In their own words, Brandon, Cori and Christian share how their lives have been changed for the better thanks to care at Shriners Children’s locations across the country.

Brandon's Family Turns to Shriners Children's Greenville After Paralysis

By Brandon, Shriners Children's patient

My name is Brandon. I am 13, and I have been blessed to experience the care of Shriners Children’s Greenville on a variety of levels for many years now. When I was 4, my parents brought me in when I had fractured my foot. The staff was kind and patient, and I was back to playing with my brothers in no time.

When I was 6, a major medical crisis once again had me back at Shriners. In August 2016, I was paralyzed on my right side when a cold virus attacked my spinal cord. It’s called acute flaccid myelitis.

I had played my last baseball game one Saturday, and by the next, I was unable to walk or move my arm. Even sitting up on the side of the hospital bed or other previously simple tasks were now grueling and painful.

I had spent a month in the children’s hospital in Greenville, South Carolina, and then several months in Atlanta for intense rehab. When it was time to come home, we once again turned to Shriners Children’s. It was a massive blessing to my parents that the hospital was less than 30 minutes from our house.

The physical therapists and occupational therapists worked with me almost daily in those early days. They were great about thinking outside the box to make therapy as fun as possible for me by creatively incorporating sports activities or anything else they thought a little boy would find amusing. They had a sense of humor and would often joke with me.

Therapy wasn’t always easy, but they always made it as fun as possible. The therapy team also was a huge help in advocating for equipment or making sure I got the help I needed with surgery.

In 2007, I had an experimental upper extremity nerve transfer surgery in Philadelphia. That surgery helped me to regain function in my right arm that I otherwise would not have gotten back. We were also back up in Philly on a snowy December day in 2020 for another surgery where Dan Zlotolow, M.D., was able to stabilize my shoulder socket.

Bracing has been another huge component of my care at Shriners. The Pediatric Orthotic and Prosthetic Services keeps me moving, literally. Doctors and other families we meet at other places are always asking about my leg brace. It truly is the best. Nate has worked hard to make sure it’s durable (I’m kind of hard on my braces because I stay pretty active, thanks to the brace), and has the latest technology available with the joints and other components. I can’t walk without my brace, so this has given me independence and a “normal” that I wouldn’t have had otherwise. It’s a game-changer.

It’s not all work, though. I’ve been able to enjoy the fun parts, too – from Halloween parties and anniversary celebrations to speaking events on behalf of Shriners Children’s.

It’s humbling to see the many different people it takes to make this organization possible. The donations matter. The medical care I get here has made things easier not only for me, but for my parents as well.

Shriners Children’s is doing important work with an incredible team of people. Because of Shriners Children’s, I am able to enjoy my life to the fullest. I will forever be grateful for their care.

 

Because of Shriners Children’s, I am able to enjoy my life to the fullest. I will forever be grateful for their care.
Brandon, Shriners Children's Greenville patient
Cori holding diploma

Cori Reflects on Scoliosis Care at Shriners Children's Lexington

By Cori, Shriners Children's patient

My name is Cori, and I am an 18-year-old patient of Shriners Children’s Lexington. I’m an active pursuer of music, a former six-year member of my high school’s marching band, and very active with friends and family. I am planning to continue my education at Greenville University, Illinois, this fall to study music education with a minor in social work. One of my biggest accomplishments was being a patient ambassador for El Hasa Shrine Club in 2017, and becoming an ambassador for Shriners Children’s Lexington in 2018.

My journey began during a routine visit to my family doctor. They found I had (what they thought to be) a minor case of scoliosis. After originally visiting a local hospital where they suggested immediate surgery, family friends and Shriners fraternity members suggested we get a second opinion at Shriners Children’s.

Our first appointment in 2015 was filled with questions, X-rays, meeting new faces, and becoming familiar with my care providers. When we met Ryan Muchow, M.D., he greeted me and my mother with a smile. He worked hard to get to know us personally and showed amazing hospitality.

Dr. Muchow pulled up the images of my back and explained that I had two curves in my spine. The top curve was 44 degrees and the bottom was 50 degrees. He explained that I could wear a back brace to keep it from getting worse or have corrective surgery. I chose the TLSO brace.

I wore this back brace for three years, 23 hours a day, seven days a week. The only time I was able to take my brace off was to work out, swim or shower.

My brace journey ended when an X-ray of my hand showed that my growth plates were completely closed and I was no longer growing. I will never forget sitting next to my back brace when Dr. Muchow came and sat down in front of me and said I didn’t need to wear the brace anymore. It was one of the most impactful days of my life.

I attended routine checkups every six months, then once a year. At an appointment when I was 16, I expressed the pain I had been feeling. While laying down I couldn’t breathe. I was limping and I was in pain consistently. My X-ray showed that my spine curves had quickly progressed to 69 degrees and 73 degrees. It took everyone for a shock.

In 2022, I underwent a full spinal fusion surgery. Waking up from the surgery, the first memory I have is my back popping for the first time and then immediate relief. The same day I was walking and the next day I was home.

It is now more than a year later and I am doing things I never thought I could. I can comfortably move. I can attend events with friends without worrying about my pain, and much more.

With Shriners Children’s you are in good hands. They will walk you through everything and are always willing to help and explain.

My advice for parents and guardians is that your child is facing something that not many, if any, people around them go through. Be patient and gentle. They are hurting. The brace is hot and itchy and the looks/comments they receive are unbearable. Listen to their problems and be there to help them. Encourage them to wear the brace, do the exercises and follow what the doctors suggest.

I would want children like me to know that the brace is there to try to prevent surgery. It helps if you let it. Be honest with the doctors, nurses and your support system so they can help you. Your hard work pays off and you will never be alone in this journey, thanks to Shriners Children’s and your support system.

Christian with two Shriners

 

Christian Recovers From Severe Burns With Help From Shriners Children's

By Christian, Shriners Children's patient

My name is Christian, and I was born in the vibrant city of Los Angeles. I am proud of my Mexican heritage. I am now 18, and have been a patient at Shriners Children’s since I was 5.

My journey to Shriners Children’s began in 2010 in Mexico, when my family and I were victims of an attack with a bomb, resulting in a house fire that gave me second-degree and third-degree burns on my face and body.

Initially, I was going to be treated in a hospital in Mexico, but my chances of survival were low. Then, I was introduced to people who would end up helping me.

You know the expression “not all heroes wear capes”? In this case, my heroes were wearing a fez.

Right after my incident, Shriners took me to Shriners Children’s Texas in Galveston, Texas, where I received the best treatment available due to their medical specialists, technology and kindness. I was hospitalized for about three months, and during that time, I felt like I was at home. Everyone was kind and always there to help me with my recovery, needs, physical and mental state, and comfort.

During my first year of recovery, I worked with physical therapists to regain mobility in different parts of my body, such as my hands, legs and arms. These areas were difficult to move at that time due to pain and scars. Throughout the years, doctors and specialists helped me regain full mobility in my body with the help of surgeries. This greatly improved my lifestyle and allowed me to participate in activities without any problems or pain, just like anyone else. These activities included running, swimming, sitting, jumping, standing, riding a bicycle and more.

In 2018, my family moved so I could continue improving my quality of life, and I began a new phase of my medical journey at Shriners Children’s Southern California in Pasadena, California.

As a patient in Pasadena, I underwent multiple surgeries, including ear and lip reconstruction, tissue expanders to facilitate growth, and grafts using my own skin, as well as laser and surgical treatments on my hands. These procedures, of course, would not have been possible without the help of amazing medical providers such as Andre Panossian, M.D., Frederic Bushnell, M.D., Katherine Au, M.D., William Magee, M.D., and De-An Zhang, M.D. Additionally, I received support from an incredible support staff including Cassie, Alma, Manny, Natalie and Connie. I appreciate everything my Shriners family has done for me. I even decided to give back by volunteering at the medical center in 2021.

I knew this journey would be hard, but even then I never stopped attending school and putting all my efforts into ensuring I excelled academically. As a result, I graduated from high school with a 3.8 GPA.

Throughout all those years of working with my doctors, from when I was little until now, I have been inspired to study hard and become a doctor myself. I hope to help others in the same way Shriners Children’s has helped me. I am now looking forward to majoring in biology, so that one day I can attend medical school and become a surgeon. Who knows? Maybe one day I can work for Shriners Children’s and help improve the lives of others, too.

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