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Scoliosis: Our Story
Parenting does not come with an instruction manual. From the beginning, it’s impossible to comprehend and prepare for all the things that raising tiny humans comes with. Most parents just wish for a “healthy” child. Health challenges with Azalya were never in our cards, but when life presents its own story, you do what any parent would do — you love your child and do what it takes.
Her journey began just 2 months into her time on Earth with us. She was diagnosed with Cystic Fibrosis, and through her maintenance around that disease, we discovered the curvature in Azalya’s spine. At the time, we were told to just wait and see... little did we know, that is the last thing you want to do with a curve in your back while still growing. By the time she was seen again, her curve had significantly worsened, and we were referred to a specialist.
Last winter, we saw the specialist and were told there was nothing that could be done to reverse a scoliosis curve — and not to believe anyone who says otherwise. We were told she would need back surgery. We were determined to get a second opinion, and through some recommendations, we found the Scoliosis Care Center in San Jose.
After our initial inquiry and their team reviewing Azalya’s x-rays, things moved quickly. Due to the significance of her curvature and her age, we were urged to start treatments immediately. That meant school, dance, soccer, and Spring Break would have to wait. Two weeks later, we were in San Jose beginning our journey.
The first three weeks were intensive: Monday to Friday, 8:30 to 4:00, rotating through four therapy stations, adjusting custom equipment, lab work, and multiple MRIs. In the final week, she was fitted with her brace and given a few days to adjust before heading home.
But transitioning home was the hardest part. We were exhausted — especially Azalya — yet therapies continued 7 days a week. Days started at 6:30am and ended at 9:30pm, filled with supplements, bracing, exercises, emotional support, and endless logistics. Over time, we adjusted. We found routines. We started to breathe again.
We’re now scheduled to return to San Jose every 3 months for the next 3–5 years. We’re incredibly grateful to have found a clinic that treats the root cause of scoliosis and has seen success reversing it. And we’re even more grateful to the friends, family, and supporters who’ve helped us stay afloat during this process.
Through everything, Azalya continues to thrive. She grows stronger each day — physically and emotionally — and she inspires us to keep going no matter how hard the path may be.
Because Azalya’s therapies are considered experimental, none of the clinic fees or custom equipment are covered by insurance, and travel plus lodging for quarterly, week-long intensive visits adds up quickly. On average, each week of treatment costs about $7K, not counting braces, supplements, and labs. Our very first three-week trip totaled $33K, and we anticipate continuing this schedule for the next 2–4 years until Azalya’s growth—and her curve reduction—are complete.
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