Support Skylar's Scoliosis Correction Surgery

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Skylar Knight and Jeanette Nederveen are organizing this fundraiser.

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MY STORY

When I was born on April 24, 1997, doctors told my parents that I would never speak, walk, or hear. Unable to breathe due to a cleft palate, I was airlifted from Winter Haven Women’s Hospital to Tampa General Hospital. There, doctors diagnosed me with Pierre Robin Syndrome and feared the lack of oxygen at birth would permanently hinder my physical and mental development. Thankfully, doctors stabilized my breathing and repaired my cleft palate at 6 months old.

Later, I was diagnosed with scoliosis (2005), hip dysplasia (2010), and hearing loss (2016) – all of which I only recently learned in June 2023 were caused by a very rare (less than 1 in 100,000) genetic disorder called Spondyloepiphyseal Dysplasia Congenita (SEDc). SEDc affects the bones of the spine (“spondylo-”) and the ends (“epiphyses-”) of the long bones in the arms and legs. Symptoms include short stature, scoliosis, hip dysplasia, respiratory problems (especially during infancy), and hearing and vision loss.

While SEDc itself cannot be cured, many of the symptoms can. I underwent a double hip replacement in 2013 and started wearing hearing aids in 2016. One problem, however, remains: scoliosis.

Over the last four years, my scoliosis has caused bouts of crippling pain and intermittent numbness which have restricted my mobility and enjoyment of daily activities. I sought opinions from several spine specialists (both neuro and orthopedic surgeons) across four different states and tried conservative medical treatments, including physical therapy, massage therapy, and pain management. While physical therapy (particularly Schroth therapy) has helped me better manage my pain, it has not stopped my curve from worsening. My curve was measured at 16 degrees in 2005, 25 degrees in 2010, and 40 degrees in January 2020. It is now approaching 65 degrees, and surgery is imminent (see x-ray at the end).

SCOLIOSIS CORRECTION SURGERY

Due to the severity of my scoliosis and complicated medical history, my Schroth physical therapist (Downey Hinrichs, MSPT) recommended I consult Lawrence Lenke, MD – the world’s leading expert in spinal deformity surgery – at Columbia University in New York City. On April 5, 2023, I took the train from Washington, DC, to New York City to meet Dr. Lenke, and I was blown away by him, his staff, and their positive impact on people like me with severe scoliosis.

Based on my imaging, medical history, and symptoms, Dr. Lenke recommended that I have spinal fusion surgery from T-2 through sacrum (basically just below my neck to my pelvis) within 12-15 months. Since Dr. Lenke was already booked for Summer 2023, I am scheduled for surgery on June 11, 2024. I am limited to surgery during the summer because I will require 1-3 months of full-time care, and my mom – a high school teacher – is only able to take that amount of time off during the summer.

THE JOURNEY FORWARD

As I began to consider the logistics and costs, I wondered if I could afford to have surgery with Dr. Lenke. I will have the obvious costs of pre-op appointments, diagnostics, hospital stay, medications, and physical therapy, but I will also have many non-medical costs such as lodging, meals, and transportation for the 2+ weeks my mom and I are in New York City. Additionally, I will have to take 1-3 months away from work (potentially without pay) and will need to continue paying my regular monthly bills, which are NOT included in the cost estimates. I estimate that surgical and non-surgical costs will total around $15,000. I have attached a detailed breakdown of estimated costs below.

I considered other doctors to decrease costs, but Dr. Lenke is the only surgeon in my area who has successfully operated on individuals like me with severe scoliosis and SEDc. Dr. Lenke’s compassion, experience, and expertise are unmatched. He has given me newfound confidence and hope in correcting my scoliosis and getting back to a ‘normal’, more active lifestyle. Thank you for reading my story and/or contributing toward my trip to New York City for spinal correction surgery with Dr. Lenke.

ESTIMATED COSTS

SCOLIOSIS AND SKELETAL DYSPLASIA RESOURCES

Above all else, I would appreciate you spreading awareness about scoliosis, skeletal dysplasia, treatment options, and medical practitioners. I am happy to answer any questions you may have, connect with others who have scoliosis and/or skeletal dysplasia, and recommend medical professionals who have made a positive difference in my life. My hope is that children/young adults with scoliosis and their families can get the best information and care as early as possible.

Here are some links with helpful resources:

Lawrence D. Lenke, MD | New York City, NY | Columbia University

http://spinal-deformity-surgeon.com/

Downey Hinrichs, MSPT | Annapolis, MD | Capital Area Scoliosis

https://www.capitalareascoliosis.com/

Julie E. Hoover-Fong, MD, PhD | Baltimore, MD | Johns Hopkins University

https://www.hopkinsmedicine.org/profiles/details/julie-hoover-fong

Skeletal Dysplasia

https://www.hopkinsmedicine.org/health/conditions-and-diseases/skeletal-dysplasia

Scoliosis

https://www.hopkinsmedicine.org/health/conditions-and-diseases/scoliosis

Schroth Method for Scoliosis