Rachel Mason's story

"Being able to do gymnastics in my condition was a way to prove to myself and others that I’m not fragile or different from everyone else.”

Rachel Mason of Long Island is a fearless 18-year-old: she's sung in front of a full audience at Radio City Music Hall. She can handspring across the floor and make it look easy. She doesn't let anything stop her — not the curve in her spine, and not the countless surgeries and hospitalizations she's endured since childhood.

Born with a Curved Spine

Photo of Rachel Mason in her prom dressRachel was born with congenital scoliosis, a rare condition in which a child’s spine is curved sideways. In Rachel’s case, five of her ribs were fused together and she was also diagnosed with thoracic insufficiency syndrome, which limits lung growth. Doctors explained that the best intervention for her was a Vertical Expandable Prosthetic Titanium Rib (VEPTR) device. Without this “growing rod” to hold open the rib cage and give her space to breathe, Rachel would likely end up on a ventilator.

Rachel’s parents didn’t know where to turn until they were referred to Dr. Michael G. Vitale, a pediatric orthopedic surgeon at Och Spine at NewYork-Presbyterian. At the time, he was one of the only physicians certified in VEPTR surgery within the tri-state area.

“From that first meeting 15 years ago to this day, we never felt rushed and there was never a question he couldn’t or wouldn’t answer,” says Rachel’s mom, Beth.

Treating Thoracic Insufficiency

Rachel underwent her first procedure with Dr. Vitale at three years old. He implanted a VEPTR “growing rod” device to help straighten her spine. The rod then needed to be lengthened periodically as Rachel grew.

“In children with thoracic insufficiency, the rib cage and spine can’t keep up with the rest of the body as they grow,” explains Dr. Vitale. “Before this treatment was developed, there was no effective treatment for a combination of scoliosis and chest wall insufficiency.”

Finding Normalcy

Rachel went through a staggering 17 surgeries between ages 3 and 12 to have the VEPTR adjusted to match her growth. The procedures, hospitalizations, and recovery weighed on Rachel and her family, but it didn’t stop them from living life. Despite her challenges, she started gymnastics in 2013 and continues to practice today. 

“Keeping true to myself, of course I picked one of the most dangerous sports for someone with spine issues,” Rachel jokes.

“I think that’s why I love it so much and I excelled quickly. Being able to do gymnastics in my condition was a way to prove to myself and others that I’m not fragile or different from everyone else.”

Rachel even managed to have some fun and find support while in the hospital--thanks in part to NewYork-Presbyterian’s Child Life program.

“Growing up, there wasn’t a single person I knew that was experiencing what I was going through,” says Rachel. “The first time I ever felt seen was with the NYP Child Life team.”

“They helped me better understand what was happening to my body, and came around with fun distractions to help me still feel like a kid even when I knew I was living a life that no parent would exactly dream for their kid to have.” 

In fact, one of Rachel’s long hospital stays led to an unexpected opportunity for her and her sister, Maya. When a child life specialist heard Maya singing at the sibling program at NewYork-Presbyterian, she told the family about Garden of Dreams, a non-profit that works with Madison Square Garden to bring life-changing programs to young people. She suggested that the girls audition for the Garden of Dreams 2016 talent show.

Maya and Rachel made the cut and performed “Blank Space” by Taylor Swift at Radio City Music Hall. Since then, they’ve also sung in the Garden of Dreams alumni choir and at NewYork-Presbyterian’s annual Amazing Kids, Amazing Care dinner. 

Through Garden of Dreams, Rachel also honed her broadcast journalism skills at various MSG events, including NHL hockey games. She even earned a merit scholarship from the program, which she plans to use towards college this fall.

Spinal Fusion Surgery for Scoliosis

Rachel had her final spine surgery at age 12, once she was fully grown. The process started with halo-gravity traction, a method used to slowly stretch, lengthen, and correct the spine curve using a metal ring (a “halo”) and a pulley system. Dr. Vitale then performed a spinal fusion, in which spinal vertebrae were joined together to form one larger bone. He also implanted metal rods to keep the spine in place as the bones healed.

The spinal fusion was a success, but healing wasn’t simple—Rachel took on-and-off breaks from gymnastics for a few years as she recovered. Today, however, Rachel sees Dr. Vitale only for follow-up checkups and X-rays. She is back to practicing and coaching gymnastics, which she still credits as her go-to outlet for stress relief. Inspired by her time in the Garden of Dreams program, Rachel also looks forward to pursuing a communications degree in London this fall.