When he was just 7 years old, Xander Cabales of Ewa Beach was diagnosed with a rare and life-threatening skin disorder called Stevens-Johnson syndrome after developing a fever and severe rash that covered his body, followed by shallow breathing and loss of skin.
Xander lost 60% of his skin, and spent four weeks on life support at Kapiolani Medical Center for Women &Children’s Pediatric Intensive Care Unit before showing signs of responsiveness.
Today, the 15-year-old high school sophomore has recovered, and was chosen this week to serve as the Children’s Miracle Network “Champion” for Kapiolani Medical Center.
“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,” he said during a ceremony held Monday at the center’s auditorium. “Being able to show how much Kapiolani did and what they accomplished to help save me — that’s a really big part for me in being a Champion.”
Xander said he aims to inspire others with a message of positivity, resiliency and kindness, and he will be doing so by sharing his story over the next year. The journey to recovery was a long one for Xander, who was diagnosed with the most severe form of Stevens-Johnson syndrome, which strikes about one person in 1 million each year.
The syndrome is a very severe reaction, most commonly triggered by medications, that causes skin tissue to die and detach, affecting mucous membranes of the eyes and mouth, according to the National Institutes of Health Genetic and Rare Diseases Information Center. Initial symptoms often include fever and flu-like symptoms, followed by a red or purplish rash in following days, and the peeling of the skin. When mucous membranes are impacted, other symptoms include severe conjunctivitis and trouble swallowing and breathing.
Throughout Xander’s ordeal, family members never gave up hope, and to this day attribute his recovery to a team of Kapiolani specialists. “The medical staff instilled hope in us,” said his father, Ronnie Cabales. “They gave us Xander back. They saved our son.”
Xander’s infection had severely damaged not only his eyes, but his skin, lungs and esophagus, requiring coordination among several specialists at Kapiolani for his treatment and care.
For Xander, recovery involved relearning how to hold his head up, sit, walk, talk and eat. He credits the teams’ use of video games as effective motivation to continue his therapy at the time. Today, he’s able to practice jiujitsu.
Those who worked closest with Xander say he always showed determination, resilience, and a desire to pay it forward, making him a natural choice for Kapiolani’s Miracle Network Champion.
“Xander is a great Champion for Kapiolani,” said his pediatric ophthalmologist, Dr. David Young, in the news release. “He represents just how difficult some of these medical problems can be and how it takes a special place and a special person to be able to come out of that as well as he did.”
As part of his role, Xander, an aspiring artist, designed a custom Champion pin with sunglasses on a background of an “X” on blue and black inside a black border.
The sunglasses, Xander’s trademark fashion accessory due to his sensitivity to light, have lenses with cracks representing his “battle scars,” which he doesn’t hide from, while the black border symbolizes the protection and never-ending support of his family.
Kapiolani has had a partnership with Children’s Miracle Network, a nonprofit which helps fill funding gaps for hospitals across the nation, for more than 35 years. Every year, 170 Children’s Miracle Network hospitals select a Champion from their communities to serve as ambassadors for their local hospital.
