My name is Jillian Franko, and I am 26 years old. I was born with several physical complications including club feet, dislocations of the knees, hips and elbows, and severe cervical kyphosis.
As parents, my mom and dad wanted to ensure that I received the best care. They scheduled an appointment for me with an orthopedic specialist, who recommended serial leg casting for my club feet. This procedure meant weekly visits to have my feet repositioned and cast.
Not seeing any results from serial leg casting, my mom contacted a local children’s hospital. She made appointments with specialists in genetics, orthopedics, and neurology. Unfortunately, they were unable to determine a diagnosis, and thus, could not provide proper care or treatment plans. Unsatisfied with the outcome of these appointments, my mom contacted the Schuylkill County Society for Crippled Children.
She spoke with the organization’s director, who informed her of their free clinics they host with a group of orthopedic doctors that travel from the Nemours Children’s Hospital, Delaware. My mom scheduled an appointment for me at the Society’s next clinic. Here, we met orthopedic surgeon Dr. Robert Stanton. By the end of our 1st visit to the free clinic, Dr. Stanton had gotten me an appointment to see a geneticist at Nemours. We were hopeful to obtain a proper diagnosis. Finally, we were about to get answers.
We made the trip to Delaware, met with Dr. Charles I. Scott and his team, and I was eventually diagnosed was Larsen’s Syndrome. A rare condition affecting about 1 in 100,000 births, Larsen’s Syndrome is characterized by multiple bone abnormalities.
A crucial part of the diagnosis process was the x-ray department. They obtained scans of my hands, feet, knees, hips, and spine — both cervical and lumbar. Dr. Stanton and Dr. Scott spoke with my parents in length regarding the care that I would require. My mom recalls Dr. Scott’s strict instructions to provide support to my neck. In examining the x-rays, my cervical spine was fragile and required immediate attention. Dr. Scott explained that if support was not maintained in the neck region, I might not survive.
I was then directed to the cast room, where I was fitted for a spinal supporting brace. The hospital arranged for us to stay at the Ronald McDonald house until the brace was completed the following day. That was only the beginning of my journey.
To date, I have undergone 11 major surgeries to correct and stabilize my bone structure. Of those 11 surgeries, 4 of them focused on strengthening my cervical spine. Recovery for these surgeries involved stabilizing my neck in a HALO apparatus for 3 months at a time. Despite the numerous operations and countless doctors’ appointments to monitor my disability’s progression, my disability continues to significantly impact my life.
My cervical kyphosis was so severe that it caused irreversible damage to my spinal cord. This led me to become wheelchair-bound at the age of 3. During one of my surgeries, I also lost the use of my left arm. Even with years of physical and occupational therapy, I was never able to regain strength and mobility in that arm. Over the years, I often felt incredibly trapped and hindered by my disability. There were so many things that I couldn’t do and a lot of things that I needed assistance with. As someone who values their independence, relying on others is something I’ve always struggled with.
The doctors at Nemours were very knowledgeable, patient, and understanding when it came to me and my treatment plan. Dr. Stanton always took the time to listen to any concerns that my mom expressed regarding my disability. Dr. Scott was also a crucial part of the diagnosis process. From an adolescent to now a grown adult still being seen by Nemours doctors, I can confirm that the level of care I receive has never wavered. Even as a young child, my doctors always took the time to listen to me. If I expressed a pain or discomfort, they never tried to diminish my thoughts or feelings. They would offer advice and recommendations to address each and every concern I had.
My doctors may not have been able to give me the ability to walk or the level of independence I desire, but they gave me the support, stability, and confidence to pursue my dreams and aspirations in my own way. I graduated high school, ranking 5th academically in my graduating class. I pursued higher education at not one, but two colleges: Lehigh Carbon Community College and Kutztown University. At Kutztown, I graduated Suma Cum Laude with a Bachelor of Science in Business Administration with a concentration in accounting.
I recently obtained a full-time position with a non-profit organization, where I currently work as an accounting assistant. In addition to my education and professional career, I’ve also been pursuing my true passion: art. As with everything else, my disability poses numerous challenges throughout my creative process. However, I’ve always found a way to adapt my projects, working around, not within my physical limitations. Throughout my journey with art, one of my biggest challenges was my limited range of motion. I was only able to create artwork on a smaller scale, since my arms cannot extend across larger canvases and paper. This inspired my series of panel portraits, where I break an image down into several pieces that come together to form a complete picture. I paint each panel individually with minor changes during the process to help the pieces blend together.
For so much of my life, I focused on my disability and the ways it has impacted my independence. I often felt that needing “help” diminished who I was an individual. While this is something I still struggle with to some extent; I’ve learned over the years that everyone needs help in some way. Although I may be speaking from my own, personal experiences, I truly believe that when we are provided with the support and resources necessary to survive, we are given the foundation to succeed.
Jillian is currently working on her personal documentary, “Drawing for Hope.” For updates, visit Jillian’s website.