Without treatment, Sienna Houston faces a life of debilitating agony.
A 12-year-old Warkworth girl will travel to New York next month for life-changing pioneering surgery that will give her a chance at a normal teenage life.
Sienna Houston has been diagnosed with “idiopathic adolescent scoliosis”, a severe curvature of the spine. If left untreated, her spine will continue to degenerate and result in a life of debilitating agony.
Mum Kim Byrne says already Sienna’s ribs are already uneven and one of her shoulders sits nearly two inches higher than the other. Her ribs are putting pressure on her lungs and stomach, impairing her ability to breathe and eat.
Sitting or standing for long periods of time causes her physical discomfort, and it is difficult for her to sleep.
“She isn’t able to participate in sport, and she doesn’t feel comfortable going swimming. It is a lot to deal with at age 12,” Kim says.
Sienna’s parents met with doctors and learned that her only option in New Zealand would be a spinal fusion of 12 vertebrae. It would leave her spine immobile, impairing everyday movements such as bending, lifting or twisting.
The procedure would require cutting through back muscle, blood transfusions and would leave a large scar down the length of Sienna’s back.
Spinal fusions are rare among children as fused vertebrae put strain on unfused vertebrae, often requiring further surgery. Kim signed up to an international forum for parents with children diagnosed with scoliosis and spent weeks reading interviews with doctors.
She learned of a pioneering procedure called “vertebral body tethering” that has been practiced in the United States for 15 years and is gaining popularity around the world. Surgeons insert screws on both sides of the vertebrae and attach cords along the spine.
It uses the body’s growth to improve the curve of the spine and allows a functional and flexible spinal column.
It is a major procedure where surgeons enter the body underneath the armpit, and deflate a lung to provide access. However, it will give Sienna a chance at a “normal” life.
Kim and her husband have mortgaged their house to be ready to start making payments for the surgery, which will take place in New York on April 26.
Between the cost of surgery, travel, managed isolation and childcare for Sienna’s four siblings, who will remain in New Zealand, Kim estimates it will cost $350,000.
“We had to sit down and talk about the financial impact the surgery would have versus taking the fusion for free. It was an awful conversation to have.
“In the end, we had to do what we knew was right in our hearts. It was a no-brainer to give a life to our girl.”
Kim’s friend Nicole Callender started a Givealittle page for Sienna, which raised more than $12,000 in its first day.
“Kim is a very community-minded person who always gives up her already limited spare time to help out locally as needed,” Nicole says.
“Now it’s time for us to give back to her and help through this stressful time.”
Kim says she has been “blown away” by the support they have since received.
“We wanted to do it privately. We are not the type to put our hands out, but our friends have found out and stepped up. It’s very humbling.”
To donate, search “Sienna Houston” on Givealittle.