Getting ahead of the curve
Watching Harlin Strang’s hip-hop dance routine, there’s no clue her body is hiding a debilitating secret.
To a pumping beat, the 12-year-old Nelson girl jumps, rolls and flips through a two-minute high-energy performance with dance partner Hayden Allen. The pair made the semi-finals at the Hip Hop Unite world championships in Portugal last October, eventually finishing eleventh.
It’s a remarkable achievement, made even more so because Harlin has a condition that threatens her full and active life. Scoliosis is a lateral curvature of the spine that has no known cause but typically emerges in adolescence.
In Harlin’s case her spine has deformed into an s-shape, with the bottom curve at around 60 degrees, putting it well into the severe category. Without surgery, she faces pain, limited mobility and potential lung complications.
After a year of exploring the options in New Zealand and overseas, her family have discovered the only treatment available to preserve her mobility is in the United States. But it comes with a hefty price tag of up to $400,000 to cover the costs of surgery and recovery in hospital.
It was a day at the beach a year ago when Harlin’s condition first came to light. She was sitting on the sand in front of her mother Brooke.
“She was bent over, and I noticed that she had a bit of a lump protruding out the side of her spine,” Brook said. “So I went up to her and got her to stand up and then bend over. I ran my fingers down her back, and they went on a big s. So I was quite shocked.”
X-rays are even more stark – drawing gasps when people see how far her spine has shifted.
Doctors were surprised that she had not been in pain with such a severe deformation, but told her parents the fitness and flexibility she had gained from dancing since the age of five had probably helped.
Brooke and her husband Andrew first explored non-surgical options, involving Harlin undergoing a month of intense physiotherapy with a specialist in Auckland and wearing a body brace for 23 hours a day.
She had to learn to sleep with the restrictive brace and wore it on the 18-hour flight to Portugal for the world champs last October.
The treatment helped slow the acceleration of her condition, but it became clear that only surgery could stop her spine continuing to deform.
Through it all Harlin has continued to dance, as well as playing netball, basketball and volleyball. She appears unfazed by her condition. Asked about the upcoming operation, she sounds more excited about being in New York than worried about the surgery.
Harlin’s father Andrew said the surgical option in New Zealand was limited to traditional spinal fusion, using rods. But they were told that would not deal with the her lower curve, that could keep deteriorating. It would also restrict her mobility, meaning she could not dance competitively.
A newer type of tethering surgery was available in Australia but Harlin was not eligible for that because of the severity of her lower curve.
Andrew’s chance conversation with a friend who knew of another Nelson girl getting scoliosis surgery in the United States led eventually to the private New York clinic that carried out a procedure called anterior scoliosis correction (ASC).
Andrew described it as keyhole surgery to cut and release the back muscles, place screws in each vertebrae and insert cords that straighten the spine. As the muscles heal, they hold the spine straight.
The recovery period for ASC was around six weeks compared to a year for fusion surgery.
Brooke said the ASC surgery was the only chance for Harlin to keep living the way she loves – with movement, energy and joy.”
Andrew, owner of Nelson-based bottled water company E’Stel, and Brooke, a fashion designer, said it had been a scary journey over the past year. The limited information about the options available for scoliosis treatment made it more difficult, and the price of the operation in the US was daunting.
They are grateful for the support and donations from the Nelson and Westport communities, where Brooke grew up. This month they staged a music and dance show at the Boathouse, raising about $7000.
“We are just willing to do everything we can to get her there and let her chase her dreams,” Brooke said.
A Givealittle page has been set up to help cover Harlin’s medical costs. More than $28,000 has been donated so far.
By Warren Gamble, Nelson Mail
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