From Shriners Children's to Adulthood

Each year, patients graduate from high school, college, or Shriners Children's Philadelphia care.

While it is bittersweet, it is also inspiring to see the amazing things our patients go on to do.

Below are the stories of two Shriners Children’s Philadelphia patients, Sydney and Hannea. You may recognize Sydney as our 2021-22 National Patient Ambassador, and Hannea, whom we highlighted during Rare Disease Day, and will be graduating from our care in August.

Sydney’s Story

Sydney learned that she had scoliosis when she was 10. Her treatment began with bracing, but despite a strict exercise regimen and wearing her brace 23 hours a day for 18 months, her curvature progressed. Searching for an alternative to spinal fusion surgery, Sydney and her family learned about the vertebral body tethering (VBT) treatment option. Sydney is now getting ready to graduate from high school and will be attending Oklahoma State University in the fall, where she will be studying health and exercise science. She is in the Honors College and a member of the Presidential Leadership Council.

Sydney plans to get her master’s degree or doctorate in occupational therapy, and her dream job is to work for Shriners Children’s as an occupational therapist one day.

Hannea’s Story

Written by Hannea

Hi! My name is Hannea, I am 20 years old, and I am a senior in college, studying social work and dance. On September 18, 2009, I started developing cold symptoms, a stuffy nose, a cough and a headache. The morning of September 23, 2009, I still was not feeling better, so I was scheduled to see my pediatrician again later that afternoon. When I woke up from a nap before my appointment, my right arm couldn't move. My mother rushed me to the hospital, where the doctors thought I had a stroke. However, that was not the case at all.

After multiple hospital visits, MRIs and tests, I was finally diagnosed with a rare disease called Parsonage-Turner syndrome with right brachial plexus neuritis. For some people, this disease causes excruciating pain in the shoulder. In my case, it caused complete paralysis in my right arm and a diagnosis with no definite treatment plan, as there is no cure for the damage this disease had done.

After my diagnosis, I had to get accustomed to living with a disability and a rare disease. I relearned how to do everything with only my left arm, such as tying my shoes, writing, typing and even dancing. In 2010, I started seeing Dr. Kozin at Shriners Children’s Philadelphia. He was the first specialist that offered to work with me without suggestions of amputation or some unreasonable tests. He was optimistic and, at the same time, truthful. There was no miracle answer, but he would keep following up with me, and if there was something he could do, we would discuss it. He's a prominent figure in my life since he's been on this journey for almost as long as I have.

On August 9, 2018, Dr. Kozin and Dr. Zlotolow performed a very extensive surgery where it helped me gain partial use back in my right arm. It consisted of a right latissimus dorsi transfer along with right shoulder stabilization. This was my miracle surgery, and I am forever grateful for this opportunity that was given to me.

Five years later, I can move my arm to various degrees and perform various activities I could not do before the surgery. My last appointment with Shriners is this August, which is hard to process since I have been seeing Dr. Kozin for 13 years now. As I have gotten older, I have realized the impact that Shriners' support and care had on my medical experience and overall well-being. It's also impacted my path in life and why I decided to major in social work and dance at Nazareth College. I hope to provide the same support, care and comfort to others as Shriners has provided to me.

A special thank you to Dr. Kozin and Kim Curtiss for helping me become who I am today by supporting me not only in my medical journey, but in all aspects of my life.

Congratulations Sydney, Hannea, and all other graduates of Shriners Children’s!