Camila’s Story: Superheroes Come in All Sizes!
Meet Camila. From the day that the Global Spine Outreach (GSO) team first casted her, and more recently crowned her in her Halo-Gravity wheelchair, she has shown us that princesses can truly be undercover superheroes.
Even during these unprecedented times, not a single follow-up visit has passed without her unique spark shining in the office. At 4 years of age, Camila first met the team back in 2015 on GSO´s first mission trip to Chihuahua, México. She was diagnosed with a rare condition known as Spondyloepiphyseal Dysplasia (SED), a form of short-trunk dwarfism that primarily affects the vertebrae and epiphysis of bones, and can cause a myriad of complications including cervical spine instability, severe skeletal and spinal deformity, respiratory insufficiency and problems with vision, to mention just a few. And, although she has proven to be a true superhero by continuously teaching us true bravery and nobility, the superhero-gene runs in the family, as we couldn’t have come this far without Mom and Dad who constantly remind us the purest form of limitless love which is that from a parent.
When her parents, Cinthia and Carlos, noticed that Camila’s 2-year-old’s spine started to show a slight curvature, they immediately started to take action, researching the best treatment options regardless of whether this was locally available or economically feasible. By age 3, Camila already had several procedures to take care of some of the general non-spine skeletal deformities that encompass her condition. Her family had already traveled across the country and had several opinions, though not as encouraging as they’d hope for, as her spinal deformity was already hitting the 70° mark and was rapidly progressing. At age 4, we were blessed to be part of Camila’s care by beginning a casting protocol in an effort to slow down the progression of her spinal deformity and buy some time for her to reach a skeletal bone maturity, enough to safely undergo the first of several procedures that would ultimately prepare her for her definitive surgical treatment.
Even though her curve kept progressing, the casting protocol succeeded by slowing down this progression, so we began to plan the first of many procedures. This would consist of implanting in her spine titanium screws and rods that would guide her spinal growth and allow her lungs and body to mature, before the final and definitive spinal fusion surgery, by lengthening the spine twice a year with smaller surgical procedures. But due to the severity of her spinal curve, she first needed to be placed in a special wheelchair that would apply traction to her spine by a device (Halo) pinned to her head for several months and using gravity as a force to straighten and lengthen her spine. Unfortunately, these special wheelchairs were not locally available, so the implantation of her growing rods had to be put on hold. Then it was time for the parental superheroes to jump in. Dad started to work with her surgeon, and by collaborating with the local news station, they designed an adapted traction-ready wheelchair for Camila, while Mom was busy running fundraisers to pay for this expensive wheelchair.
Once ready, it was time to place her halo, or as Camila would positively and accurately describe it: her crown. This device was painlessly screwed with 6 pins to her skull and was planned to be worn for 3-4 months to prepare her for her Growing Rods. Cami’s reaction to her halo was surprising, her level of understanding was beyond her age, which wasn’t a surprise to anyone.
But her reaction to her wheelchair was a different story. You could see a hint of discontent towards it, but the reason behind it was unclear. Finally, once painted pink it was a whole different story as Cami really enjoyed to be in her chair. She was very diligent to maintain the suggested daily hours in it and Dad showed us one more time his love towards Cami by engineering a pulley system that would maintain traction even while in bed in order to maximize the results from her traction. She immediately started to gain weight, her back pain rapidly began to disappear, and despite small hiccups related to implant transportation and other logistic-related events, everything was right on track for her Growing Rods surgery… until the current and tragic pandemic began.
Like many families around the world, Camila’s family was strongly affected by this deadly virus. After years of mentally, physically and spiritually preparing for her surgery, travel restrictions made GSO’s mission trips impossible to take place, and like many of our patients, Camila’s treatment was once again placed on hold. Currently, at age 9, she was placed in a new cast in efforts to maintain what was gained with 4 months of halo traction.
Cami and her family have a very special place in our hearts. We have been through many things together, we have shared many laughs, and, we have shared many frustrations. But, even though Camila suffers from this rare condition, she and her family have not allowed this to take over of their lives. She has proven to be anything but a delicate princess, and more like those who have superpowers, like the ones we see on TV and movies. We are very thankful to be part of her story and we wish to continue this friendship even after we are done taking care of her spine.
So, who is Camila? Like many Mexican kids, she loves enchiladas and mazapanes. She spends most of her days dancing, singing and listening to music; pretty much like every 9-year-old. But as you just read, she is no ordinary kid. She has proven to be a noble princess, and more remarkably, an undercover superhero. And we are blessed to be a part of her family.
By Fernando Rios, MD
SDSF Research Fellow
SDSF would like to thank Camila and her parents for sharing her story and we hope that someday soon she will be able to take the next step towards her final spinal treatment.
SDSF also thanks Dr. Fernando Rios, our current SDSF Research Fellow, who initially was introduced to SDSF through our joint mission trips with Global Spine Outreach (GSO). Dr. Rios demonstrates the type of love, caring, dedication and drive necessary to care for all patients with severe spinal deformities. Fern, we are so proud of you and are honored to have you as a part of our SDSF Family!