Justin Bieber has millions of fans but to 8-year-old Monique Naranjo of Bakersfield, the mega teen heartthrob is more than just a good-looking singer and actor – he’s like her lifeline.
Diagnosed with a rare congenital disorder in which she can not walk and has trouble breathing, Monique’s greatest wish is to meet the worldwide sensation. In fact, her desire is so strong it helped get her through a recent 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,” recalled Sophia Naranjo, Monique’s mom, as she sat near her daughter in her hospital bed at Children’s. “She was giving up and didn’t want to let the doctors 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!” said 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,” said 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 likes to scoot on her bottom across the floor when possible.
She also has associated restrictive lung disease, severe scoliosis and failure to thrive, meaning her physical growth is significantly less than that of her peers. Prior to the trach procedure, at home Monique used an oxygen mask during the day and the BiPap machine at night to help her breathe better. Sometimes she needed the BiPap 24 hours a day if she caught a cold or became ill.
“Monique’s quality of life was severely compromised,” said Dr. Reddivalam Sudhakar, medical director of pulmonology at Children’s.
To help Monique function better and enjoy life more, Dr. Sudhakar and other pediatric specialists at Children’s recommended she undergo a tracheostomy and obtain a gastrostomy tube, or g-tube. “We knew a trach was the only thing that would help her survive,” said Dr. Lauro Roberto, a pediatric pulmonologist at Children’s.
At first Monique and her family resisted the idea of such invasive procedures. It was Monique’s obsession with meeting the 17-year-old pop star that helped change their minds. They soon learned the power of the “Bieber fever.”
To help with the decision-making process, Dr. Sarah Smith, a hospitalist at Children’s, recalled asking Monique about what she wanted out of life.
“She wanted to move forward with the procedures because of her goal to meet Justin Bieber,” said Dr. Smith. “Here’s this medically complex child, facing quality-of-life decisions, and yet she’s like any other tween. It was very sweet.”
One glance around Monique’s room at Children’s spoke volumes of the little girl’s admiration for Bieber. His name and image were plastered everywhere – from on the T-shirt she wore, to the CDs, DVD movies and wall posters in her room. His likeness with the trademark haircut even scrolled across her handheld Nintendo DSi.
“This patient has a fever alright,” said Dr. John Kinnison, a hospitalist at Children’s who stopped by to check on Monique as she continued to recover from her trach procedure. “Severe Bieber fever that is!”
“I love his music,” said Monique while her favorite song, “Baby,” played softly in the background.
An extra special poster hung behind her bed. Entitled “Never Say Never” the poster depicting Bieber’s documentary about his life read: “Find out what’s possible when you never give up.”
The poster was shipped overnight express to Children’s specifically for Monique. How that happened is a story itself. Knowing Monique’s fascination for Bieber, Dr. Smith also knew that Dr. Aaron Reitman, then a resident physician at Children’s, is personal friends with Jon Chu, who directed “Never Say Never.”
“Sarah asked me if there was something I could do,” said Dr. Reitman. “I made a call and Jon sent some posters right away.” Dr. Reitman also left a distinctive pair of bright purple 3D glasses in Monique’s room that he received when he attended the premiere of “Never Say Never” in Los Angeles. “It’s great to make these kids smile,” said Dr. Reitman.
“It was such an awesome surprise for my daughter,” said Naranjo. “She was so happy.”
Earlier in the year, Naranjo also surprised Monique by taking her to see “Never Say Never.” “It was raining and I wasn’t sure if she would be up for it but the weather didn’t faze her,” she said. “Monique was glued to the screen, smiling and clapping.”
Never Give Up
Dr. Sudhakar emphasized it’s vital to a patient’s progress to have goals and activities that bring joy. “People like Monique who have something to look forward to or do things they enjoy tend not to get depressed,” he said. “Depressed people give up. The non-depressed ones get fewer infections and have a better immune system.”
Usually upbeat, Monique acknowledges that living with her condition can be tough. Sometimes she feels like she’s “on a leash” because she doesn’t have the same freedom of movement as other people – but she makes the best of it. “One good thing about not walking is that I don’t have to get the TV remote,” she said with a laugh.
With an energetic, loving mother and 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,” said Monique of the “Never Say Never” film’s message encouraging people to pursue their dreams. After a brief pause, her eyes began to twinkle: “And I’m not going to give up on my dream.”