Helping Paige: Family of 14-year-old Nevada City girl in need of funds for their daughter’s spinal surgery
The teen years have not been anything like what Paige Lyon envisioned for herself.
Up until the age of 12, there were no signs that anything was wrong. She was a happy Nevada City girl who loved ballet, jazz, tap and hip hop.
And yet suddenly, there she was at the age of 14, standing alone in the courtyard of Seven Hills Middle School passing out fliers and bracelets to her classmates. She wasn’t raising money for a sports team or school field trip. She was — and still is — raising money for surgery she herself urgently needs.
At the age of 12, Paige went in for a routine check up and the doctor noticed pronounced curvature in her spine. Diagnosed with scoliosis, six months later she was in a hard plastic brace, which pushed on her lungs, made it hard to sleep and was uncomfortable while sitting all day in class.
Then the bullying began.
“Seventh grade was the worst,” said Paige’s mother, Vanessa Lyon. “There was so much name-calling and negativity. It caused a lot of anxiety.”
“The kids called me hunch back,” said Paige. “I tried to make it into a joke, but it’s not a joke. I lost a lot of confidence in myself — I started to believe that what they were saying was true.”
Consider the options
At first, the curve in Paige’s spine was a moderate 32 degrees and she wore a brace for a grueling 18 to 23 hours per day. Yet as the months passed, the curve continued to progress and it is now over 70 degrees. Her spine has twisted, causing a hump in her rib cage and today, after exhaustive alternative therapies, her only remaining option is surgery, said her father, Chad Lyon.
“We decided against spinal fusion — it’s literally a 100-year-old treatment,” he said. “There is limited mobility, multiple surgeries involved and the possibility of ongoing pain – so we began researching all other options.”
Paige and her father traveled to a scoliosis camp in Wisconsin, where they began learning about treatment options around the country. That’s when they heard about Anterior Scoliosis Correction, also known as ASC.
Considered less invasive that spinal fusion, the procedure includes placing tiny screws on the outside of the vertebrae, which are then connected by flexible cord. As the cord is tightened, the spine is corrected and straightened, but still allows the patient to move and bend.
This procedure is more commonly performed on people who are slightly younger than Paige, whose bones are still soft, said Chad. Yet Paige’s case is more urgent than most, due to the increasing curvature of her spine, which could eventually impact organs, lungs and stomach. She is already having a hard time eating much, added Chad.
Because she has been diagnosed with “severe scoliosis,” there is only one group of surgeons — located at the Institute of Spine and Scoliosis in the New York area — that will perform the ASC procedure. After flying out to meet with doctors, Paige was deemed a good candidate for the surgery, which they said would stop the advancing curvature and allow her remaining growth to re-form her spine, rib cage and muscles.
Not covered cost
The hitch? Insurance will not cover the cost of the surgery, which must be paid in full ahead of time. The family is now scrambling to cover the $150,000 needed. Chad has refinanced his house and is selling many of his possessions. Much to Paige’s dismay, he is prepared to sell his home if they are unable to raise the funds by other means. Paige’s grandparents are selling their car.
A GoFundMe.com account has been set up, with about $25,000 raised so far. Coldwell Banker Grass Roots Realty has organized their first “Giving Back Fundraiser,” with Paige as beneficiary, set for 2 p.m. at Gold Country Gym in Grass Valley.
The event will include an open gym for kids, silent auction, exercise and dance classes, live music by Achilles Wheel, the Dive Food Truck, Horn of the Bull Taqueria, Knead a Donut, Paradise Snow (shaved ice), local wines, brew from ‘ol Republic and more. All proceeds go toward Paige’s medical costs.
“Time is of the essence” said Chad. “Paige’s condition is only getting worse. We’re all taught to be self reliant, so it’s been humbling to ask for help. I’m a fourth generation Nevada County resident and was taught to work hard and pull my own weight. But we never saw this coming and can’t do this without reaching out. Paige is just an innocent kid who has barely even started her own life.”
“There has been less bullying this year in the eighth grade and some kids have actually wanted to help,” said Paige. “But I’ve grown too and if they say something mean, I don’t care. I’ll do anything to reach the goal because it will change the rest of my life.”
To contact Staff Writer Cory Fisher, email her at Cory@theunion.com.