2016 – Estefany Santos Rosales

Estefany1We would like to introduce Miss Estefany Patricia Santos Rosales, from Guatemala. In 2016, she was a sweet 16 year old girl who suffered from a rare spinal deformity (severe congenital kyphoscoliosis), which along with the obvious physical impact also caused her considerable pain and was potentially life-threatening.

In early childhood, Estefany showed no signs of discomfort or pain. Then her normal childhood was interrupted in June 2012 when Estefany’s family began to notice a bulge forming in her back. Concerned, they proceeded to take her to the local hospital where after a series of X-rays and other exams she was given a scoliosis diagnosis. From that point on, they visited over a dozen doctors in Guatemala who conducted additional tests, X-rays and CT scans, but no one was able to find a solution to her condition. All they were able to do was prescribe pain medication and rehabilitation exercises which have had little effect. For the next four years, Estefany’s condition continued to worsen and for the last 18 months her pain has intensified to the point that she has difficulty sleeping. She cannot sit or stand for long periods of time, her bulge has enlarged and her condition has started to take a toll on her morale. In addition to the impact on her self-image, her activities are severely limited. If she were to remain untreated, this musculoskeletal disorder could continue to progress at a rapid rate leading to possible neurological deterioration, breathing problems, pulmonary hypertension and/or paralysis.

Estefany and DoraThis has all been very difficult for Estefany’s family. They have felt helpless and discouraged not being able to find a solution in Guatemala and not having the financial resources necessary to travel to specialists abroad. They do their best to keep her from falling into a depressed state, but it is becoming tougher for her to cope with the fact that she cannot do what other 16 year olds can. She does have a strong support system at home comprised of her family, friends and the convent school she attends. And, thankfully, after reaching out to SpineHope and upon acceptance into the U.S. Hub Program, she had the opportunity to receive the surgery she needed to help correct her condition.

Estefany received her operation on October 11, 2016 and was conducted by Dr. Matthew Geck at Dell Children’s Medical Center in Austin, Texas. We are grateful to all of the organizations willing to donate professional services, equipment and supplies, including: ALG Comprehensive Immigration, ARA Austin Radiological Association, Bee Caves Pediatrics, Capital Anesthesia Association, Austin Children’s Chest Association, Medtronic Inc., NuVasive, Inc., Pediatric Critical Care Associates, Pediatric Specialty Services, Ronald McDonald House, ‘Specially for Children, Children’s Hospital Subspecialists of Central Texas, Seton Children’s Ear Nose & Throat Center, and Seton UT/Southwestern University Physicians Group.

Also, a special THANK YOU to her Sponsor, SentryNeuro, who has graciously agreed to cover the costs of travel, lodging, food, medication and other expenses for Estefany and her Mother, Dora (seen in the photo above). We are grateful to all who are a part of this collaborative and life-changing effort!

6 Months after her surgery, Estefany returned to Austin for a check-up with her surgeon. We are proud to report that Estefany has recovered well, has very little pain (practically none) and is much happier with her body, her confidence and her life!