Learning curve: Nevada City family sees results in new treatment for scoliosis
HOW TO HELP
Scoliosis Awareness Exhibition and Art Show Fundraiser for Addison Haller
The Broad St. Bistro, 426 Broad St., Nevada City
Exhibit: Throughout the month of June, National Scoliosis Awareness Month
Reception: 5 to 6 p.m., June 1
Information: Call 530-265-4900 or email TinaBasich@aol.com.
Eleven-year-old Addison Haller has always loved to dance. Throughout her life, her boundless energy and fluid movements never suggested that anything was amiss.
But in August of 2017, a routine medical check up revealed a 30 percent curvature in her spine, which proved to be quickly worsening. Addison was diagnosed with scoliosis, which is an abnormal lateral curvature of the spine. She was offered treatment at the Shriners Hospital for Children, but she would have to wait a full five months.
But with Addison in the middle of a growing spurt, which typically spans from ages 10 to 14, her curvature was becoming more profound by the day.
Addison’s parents, Tina Basich-Haller and Zach Haller, were stunned. They knew nothing about scoliosis and scrambled to learn all they could. The Nevada City couple discovered that spinal surgery is a common method of treatment for scoliosis curves that are more than 40 degrees. Eager to avoid surgery, they were impressed with the ScoliAcademy at the Janzen and Janzen Health Center in Campbell, which had recently developed a treatment program to help patients correct scoliosis and avoid surgery.
Tina and Zach felt this treatment could help correct Addison’s scoliosis, with the hopes of eventually giving her a pain free, flexible back for the rest of her life. They took the plunge and began Addison’s intensive treatment in October of 2017.
The downside? The treatment — still deemed experimental — was not covered by Addison’s health insurance.
‘We’re going to try it’
“What would you pay for a straight back for your child and have her avoid surgery?” said Tina. “We thought, if there’s a treatment that claims they can do it, we’re going to try it.”
As a result, for the past eight months, the entire family has embarked upon an ambitious daily routine. Addison spends two hours a day in a “chair” at the family home, which is designed to stretch her spinal cord so it can properly accommodate her rapidly growing vertebrae. She also spends part of most days wearing a “spinal weight,” which pulls her spine into alignment. She also wears a brace 24 hours a day (except when she is bathing or stretching), which brings her back to just 1 degree of curvature. This encourages the muscles and spine to adapt to the correct position.
“At first, I was so overwhelmed, I was on my knees,” said Tina. I almost couldn’t handle seeing her in that chair. How could she do that and get back into it every day? I had to remind myself that it was not a torture chair — it’s saving her back as long as we keep it up. It was the hardest thing we’d every done.”
Physicians at the Sutter Medical Center were impressed when they saw that Addison’s spinal curvature had decreased by 18 degrees in just five months.
“They thought it was incredible — they told us, ‘Keep doing what you’re doing,’” said Tina. “Sutter confirmed that we were on the right path. I realize that surgery is the only option for some, but there are patients at Janzen and Janzen who come out of a four-year treatment cured. After five years, they still don’t need a brace. The goal is to keep Addison’s spine stretched for four years, until her spine is fully grown. We feel like this hard work for four years is a short time to make a lifetime of difference.”
‘A whole new side of her’
Family and friends were amazed to see a transformation in Addison, who has taken complete ownership of her treatment. She’s created her own daily schedule and plays games on an iPad during her daily two-hour stint in the chair. She says she “feels naked” when she’s not wearing her brace. Unlike many children, she opts to wear it on the outside of her clothes.
“I’m so proud that Addison has taken this on without shame of how she looks in her brace,” said Tina. “I’ve seen a whole new side of her — so much inner strength and confidence coming forward.”
“When my classmates first saw my brace they thought I had surgery, but I explained that I’m trying to avoid surgery,” said Addison. “Now they help me with my brace, and I brought my stretching equipment to show and tell. Sometimes people look at me, but I don’t really care.”
The Basich-Haller family’s out-of-pocket expenses so far are over $50,000. The treatment over the next four years is expected to be another $40,000. Family and friends are pitching in to help raise much-needed funds.
“We realize that this was our choice — we knew we had chosen a treatment that was not covered by insurance,” said Tina. “We understood the costs up front, but we felt this was the right path for Addison. My hope is that this treatment will eventually be covered by insurance and available to everyone.”
The family, along with local artists and friends, is presenting an “Art Show Fundraiser and Scoliosis Awareness Exhibition” through the month of June at The Broad Street Bistro in Nevada City. While a relative has graciously started a GoFundMe account on the family’s behalf, various works of art and prints are also available for purchase (including works by Addison and Tina), with all proceeds from the event going toward Addison’s scoliosis treatment. Stunning photos of Addison, taken by Grass Valley photographer Kim Sayre, are also part of the exhibit.
The event coincides with the month of June, which is National Scoliosis Awareness Month. As art sells, it will be replenished by new works, said Tina.
The public is invited to an opening reception from 5 to 6 p.m. on June 1 at The Broad Street Bistro, the night of the year’s first Art Walk. Donations can be made on site at the Bistro or at My Favorite Things (Tina’s shop) at the top of Broad Street in Nevada City. Online donations can also be made by visiting the GoFundMe site at https://www.gofundme.com/addison-haller039-scoliosis-treatment.
The best part about Addison’s ongoing treatment? She’s still able to dance and wears her brace proudly as she moves gracefully across the floor. Now a student at the Sierra Dance Institute in Grass Valley, she recently performed a solo dance to a song taken from the musical film, “The Greatest Showman” entitled, “This is Me:”
“When the sharpest words wanna cut me down,
I’m gonna send a flood, gonna drown them out,
I am brave, I am bruised,
I am who I’m meant to be, this is me.
Look out ‘cause here I come,
And I’m marching on to the beat I drum,
I’m not scared to be seen,
I make no apologies, this is me.”
To contact Staff Writer Cory Fisher, email her at Cory@theunion.com.
Start a dialogue, stay on topic and be civil.
If you don't follow the rules, your comment may be deleted.