Monigue's Story Sponsored By Kathleen L. Behr, MD Dermatologic Surgeon
Monique's Photos Sponsored By Maxco, Max & Marty Flaming
NEVER GIVE UP
Justin Bieber has millions of fans but to 9-year-old Monique Naranjo of Bakersfield, the mega teen heartthrob is more than a good-looking singer and actor – he’s like her lifeline.
Diagnosed with a rare congenital disorder in which she can’t walk and has trouble breathing, Monique’s greatest wish is to meet the worldwide sensation. In fact, this strong desire helped get her through a visit to Children’s Hospital Central California’s Emergency Department (ED) and undergo invasive procedures expected to prolong and improve her life.
“She could hardly breathe and had a fast heart rate,” recalls Sophia Naranjo, Monique’s mom, sitting near her daughter’s hospital bed. “She was giving up and didn’t want the doctors to do what they needed to do. Her dad and I told her she needs to get better, to not give up, so she can meet Justin Bieber. After that she started to get better.”
“Because I believed you!” says Monique sweetly, shortly after undergoing a tracheostomy during what became a two-month stay at Children’s.
Just the thought of meeting Bieber makes Monique’s face beam. “Some day I hope,” says the long, dark-haired girl, followed by a dreamy sigh. “He’s sooo cute.”
Journey to better health
Diagnosed with congenital arthrogryposis, characterized by multiple joint contractures throughout her body, Monique’s frail body is essentially folded in half. She also has associated restrictive lung disease, severe scoliosis and failure to thrive, meaning her physical growth is significantly less than her peers. Prior to the trach procedure, Monique used an oxygen mask and BiPap machine at home to help her breathe. “Monique’s quality of life was severely compromised,” says Dr. Reddivalam Sudhakar, medical director, pediatric pulmonology, at Children’s.
To help Monique enjoy life more, Dr. Sudhakar and other pediatric specialists at Children’s recommended she undergo a tracheostomy and obtain a gastrostomy tube. “We knew a trach was the only thing that would help her survive,” says Dr. Lauro Roberto, a pediatric pulmonologist at Children’s.
At first Monique and her family resisted these invasive procedures. It was Monique’s obsession with the 18-year-old pop star that helped change their minds. “She wanted to move forward because of her goal to meet Justin Bieber,” says Dr. Sarah Smith, a pediatric hospitalist at Children’s. “Here’s this medically complex child, facing quality-of-life decisions, yet she’s like any other tween. It was very sweet.”
One glance around Monique’s room alone demonstrated the little girl’s admiration for Bieber. His name and image were plastered everywhere – from the T-shirt she wore, to the CDs, DVD movies and wall posters. His likeness with his trademark haircut even scrolled across her handheld Nintendo DSi.
“This patient has a fever alright,” says Dr. John Kinnison, a pediatric hospitalist at Children’s as he checked on Monique. “Severe Bieber fever that is!”
An extra special poster entitled “Never Say Never” hung behind her bed. Depicting Bieber’s documentary about his life, it read: “Find out what’s possible when you never give up.”
The poster was shipped overnight for Monique. How that happened is a story itself. Knowing Monique’s fascination for Bieber, Dr. Smith also knew Dr. Aaron Reitman, then a resident physician at Children’s, is personal friends with Jon Chu, who directed “Never Say Never.”
“I made a call and Jon sent some posters right away,” says Dr. Reitman, who also gave Monique a pair of purple 3D glasses from the “Never Say Never” premiere. “It’s great to make these kids smile.”
Dr. Sudhakar emphasized the value of patients having goals and activities. “People like Monique who have things they enjoy tend not to get depressed,” he says. “Depressed people give up. The non-depressed have a better immune system.”
Usually upbeat, Monique acknowledges living with her condition can be tough – but she makes the best of it. With supportive family, friends and caregivers, the friendly girl finds it difficult to carry a frown for long. One look at Bieber quickly lifts her mood anyway.
“Justin is very inspiring,” says Monique of his message for people to pursue their dreams. Her eyes twinkle: “And I’m not going to give up on my dream!”