“Hope is Everything in Scoliosis!”
Guadalupe is four years old, and like many little girls her age, she enjoys singing and goofing around with her sisters. But Guadalupe has a little secret…she’s not your average toddler. She’s actually a superhero with secret superpowers, including the ability to vanquish fear, leaving in its place courage and uncontrollable laughter.
These powers have come in very handy over the years, as Guadalupe was born with a severe case of scoliosis (within the top 10% in complexity). Although tiny, she has fought her way through several surgeries without which her heart, lungs, and life would be in jeopardy. In light of her age, size, and the complexity of her case, she traveled from her hometown in Mexico to pursue treatment in the United States where the technology she needed was available. Under the care and guidance of Setting Scoliosis Straight President and chief of the division of Orthopedics & Scoliosis at Rady Children’s Hospital—San Diego, Dr. Peter Newton, Guadalupe continues to be a light of inspiration for the scoliosis community, her friends, and her family.
Although Guadalupe’s life has not been easy, and the road ahead will surely have its challenges, her innate ability to see goodness and joy at every turn and in every person she meets is something we can all learn a thing or two from.
Her organization, Juntos Por Guada, began as a means to raise money for Guadalupe’s treatment and expenses. Today, Juntos Por Guada has been instrumental in helping fundraise for families throughout Mexico with similar medical challenges. It is community support like this that remains an invaluable lifeline for many.
Setting Scoliosis Straight and Juntos Por Guada are excited to launch a special partnership with hopes of strengthening global support for pediatric spine research, especially in countries in Central and Latin America where scoliosis funding, technology, and treatments remain insubstantial.
To learn a little more about Guadalupe, or Guada as she is sometimes known, we held a Q & A session with her family to get to the bottom of exactly how special this young girl is!
The Gutierrez Family Q & A
What made you want to participate in the Setting Scoliosis Straight Giving Tuesday photo challenge? [#GivingTuesday is a global day of giving driven by social media and community collaboration.]
Participating in the Giving Tuesday photo challenge was a way to be involved and actively participate in this great community. Scoliosis in certain childhood stages can be rather uncommon, and it’s great to hear experiences from other patients. Also, we truly believe Guadalupe is an enthusiastic girl who enjoys sharing experiences!
What has been the hardest part of your family’s scoliosis journey, & what has been the best part?
Unlike many other children being treated with scoliosis at Rady Children’s Hospital in San Diego, Guadalupe is Mexican, and we used to live in Mexico City. Unfortunately, Mexico does not have the required technology to treat scoliosis in early stages of life. Relocating to San Diego, with Guadalupe and her two sisters, was a special challenge. Then, our first experience with the initial back surgery was particularly challenging because Guadalupe had to stay in the ICU for fifteen days, and she was only two years old. But, she made it through!
In what ways has hope been necessary & helped get you through Guadalupe’s diagnosis & treatment of scoliosis?
Hope is everything in scoliosis. Hope and patience. Scoliosis is a particular kind of marathon, and you never know where the road is going. Your next curve might be uphill or downhill. It may rain. Scoliosis really pushes your spirit to submit to whatever is required, to adapt your life, and that of the family’s, to one single purpose: your kid’s health. In our case, faith in Dr. Newton and in his team’s expertise, helped.
What do you hope to inspire in others?
There are two main things that form Guadalupe’s personality: attitude and character. Guadalupe’s acceptance and positive spirit towards her own difficulties have surprised many. She has the ability to see beautiful things even in the most difficult circumstances. During our fourth week in the hospital, with Guadalupe in halo traction, at her request we would walk down a particular hallway because she liked the purple color of the floor. Guadalupe can surprise you. The small details that make her day make our lives happy.
If you were to share a message with another child or family currently struggling with scoliosis, what would be your message of hope?
Be strong, and be brave. Children with scoliosis are born with a strong character, and they are capable of dealing with difficulties. Parents should rather focus in facing the problem as it is and look to the bright side of scoliosis. Scoliosis is also a kind of blessing that may allow you to appreciate other things in life. It can help you put things into perspective and see that many of what we call “problems” or “difficulties” are really not such things when you face health difficulties. Knowing this may allow you to have a positive attitude toward your own life.
Read more patient stories like this from around the world.