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 things you want to do with a curve in your back while you are still growing. By the time she was seen again, her curve had significantly gotten worse, 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, don’t believe anyone that tells you otherwise, and she will need back surgery.
We were determined to get a 2nd opinion and through some recommendations, we found the Scoliosis Care Center in San Jose. After our initial inquiry, their team reviewing Azalya’s x-rays, things went very quickly from there. Due to the significance of her curvatures, and her age, we were urged to start treatments as soon as possible. That meant school, dance, soccer, and Spring Break would have to wait. Two weeks later, we were in San Jose to begin our journey. Again, due to the significance of Azalya’s curve, her treatment plan required a 3- week initial intensive treatments regime. The clinic was designed as group therapy with 4 rotating stations, The first three weeks were Monday – Friday 8:30-4:00 rotating through the stations, adjusting her custom equipment, getting genetic methylation lab work done, and multiple MRI’s. The last week she was fitted with her custom brace and had a few days to get that all adjusted, cut and molded before heading home on the final day. All her custom equipment was loaded up and we were SO excited to be going home. Little did we know, transitioning home would prove to be our biggest struggle thus far. We were all exhausted to the core, especially Azalya but the therapies were expected to continue at home 7 days a week. Over the course of the next several weeks, we all did our best to adjust to new routines. Starting at 6:30am and going until 9:30pm became our new schedule. From new supplements that needed to be given at all different times around food consumption, to finding time to fit in what seemed like an impossible amount of therapies into our schedule, to working through pain and discomfort in order to gain time in her brace, to addressing and dealing with the emotional and mental tole this all takes on a 10 year old, we eventually started to come up for air and feeling more confident in our routines and progress. Currently, we are scheduled to return to San Jose for a 1-week treatment checkup and adjustment of all equipment and brace the week of June 23rd
We are expected to return every 3 months with all equipment for the next 3-5 years depending on Azalya’s progress and results. We are grateful to have found a clinic that treats the root cause of scoliosis and has success reversing scoliosis curvatures. We are also extremely grateful to our support system and everyone who continues to surround us with positive support. Our goal is to share Azalya’s journey to bring awareness to what can be an invisible disease until it is a scary situation and to encourage others to take action sooner rather than later. Through everything, Azalya still continues to thrive and get stronger physically and mentally every day which makes us very proud and motivated to continue our hard work for as long as it takes.
