Kapi‘olani Medical Center for Women & Children’s inspiring 2022 Children’s Miracle Network Champion
Kapi‘olani Medical Center for Women & Children has been Hawai‘i’s only Children’s Miracle Network (CMN) Hospital since 1984. Every year, each of the 170 Children’s Miracle Network Hospitals in the nation identify a “Champion” who will serve as an ambassador for children treated at their local children’s hospital. These ambassadors spend a year advocating for the charitable needs of children’s hospitals across North America. Xander Cabales has been selected as the 2022 CMN Champion for Kapi‘olani, and his astonishing story offers hope and inspiration for us all.
“It’s important for me to talk about all of the things that Kapi‘olani Medical Center for Women & Children did for me to get where I am right now,” Xander shares.
Now 15 years old, Xander was only seven when his back-to-health journey began.
It started with a fever. Xander’s temperature spiked to 105 degrees. He broke out in a severe rash. Over the next few days, his skin started to come off around his eyes and mouth and his breathing became shallow. Xander was transferred to Kapi‘olani where he was diagnosed with Stevens-Johnson syndrome (SJS) and eventually toxic epidermal necrolysis (TEN), a rare form of SJS that only affects about one in a million people each year.
“It was my job to find out what was happening,” shares Dr. Marian Melish, Kapi‘olani’s pediatric infectious disease specialist, who diagnosed Xander and treated him upon his initial arrival at Kapi‘olani Medical Center’s Emergency Department. “You could tell from one look at him what the diagnosis was. Toxic epidermal necrolysis is a condition that is rare, but not so rare that we didn’t already have a protocol for dealing with it … When you have rare conditions that require minute-to-minute care and every possible specialty, that’s what you can get from a children’s hospital.”
This care included spending several weeks on life support in the Kapi‘olani Pediatric Intensive Care Unit.
“TENs is the most severe form of Stevens-Johnson syndrome, where it can be fatal,” shares Laura Cabales, Xander’s mom. “It attacks anything mucosal in your body: your eyes and your lungs and your skin—just everything you’re not really thinking about becomes like a rash, and then turns into a burn and completely sloughs off.”
Following his stay in the ICU, Xander had to relearn how to sit, walk, talk, and eat, as the infection had severely damaged his eyes, skin, lungs, and esophagus. He lost an astounding 60% of his skin throughout the journey. Xander’s family credits his miraculous recovery to the amazing team of specialists at Kapi‘olani, who provided not only care, but also friendship and entertainment.
“My body felt weak [often],” Xander recalls, “so being able to play video games at Kapi‘olani was something I could enjoy that was helping me get better. It was very helpful that a lot of the doctors and nurses would cheer me on and motivate me. They were very supportive in everything.”
And Xander’s family is equally grateful for the caring staff.
“At the end of the day, you don’t realize you’re going to need those things that only a hospital provides, until, unfortunately, on your worst day, when you really do need them,” Laura says. “And for us, we were lucky enough that Kapi‘olani was there to support us.”
“The medical staff instilled hope in us. They gave us Xander back. They saved our son,” shares Ronnie Cabales, Xander’s dad. “It’s not only just his story. I think his personality makes him a sure fit for being a Champion. It’s the strength that he carried with him when he was sick that I think resonates in other people. Those around him can feel it.”
Every minute, 62 children seek treatment at CMN Hospitals across the nation. Whether they suffer from common childhood afflictions, like asthma and broken bones, or fight bigger challenges, like birth defects or cancer, CMN Hospitals provide comfort, treatment, and hope to millions of sick kids. In fact, CMN Hospitals treat an astounding one in 10 children in North America each year.
As a not-for-profit medical center, Kapi‘olani relies on community support to further its mission of caring for Hawai‘i’s families and creating a healthier Hawai‘i. Kapi‘olani is committed to providing advanced, quality care to all patients, regardless of their ability to pay. One hundred percent of the money raised in Hawai‘i stays here to help our keiki and create future CMN Champions like Xander.
As CMN Champion, Xander was challenged with designing a pin for his year, which will be gifted to the thousands of people who help raise money for Kapi’olani. Xander channeled his love of art and sunglasses—his signature accessory—into his design which, for him, holds deep symbolic meaning.
More than a stylish addition to his wardrobe, Xander’s sunglasses protect his eyes, as he developed light sensitivity, known as photophobia, because of SJS/TEN. The cracks in the sunglasses design represent his body scars, which he doesn’t consider imperfections, but rather visual representations of his journey: symbols of his strength and what he has overcome.
The “X” stands for Xander, and the black border symbolizes his family’s endless protection and support. Citing black and blue as his favorite colors (also the SJS/TEN awareness colors), Xander wishes to inspire other health warriors to not hide their scars, but rather to be proud of their “battle scars.” The high school student will do the same as he and his family share their experiences throughout the year to motivate and thank the community for its support.
“Through this, a lot of people can understand my story, and they can understand what a lot of kids in the hospital may have gone through,” Xander says. “Being able to show how much Kapi‘olani did and what they accomplished to help save me—that’s a really big part for me in being a Champion.”
Learn more and donate at www.Give2Kapiolani.org.
Photos: Kapi‘olani Health Foundation