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‘A tough kid’: Redding teen triumphs over rare medical condition

Anakalia Naretta, center, poses at home with her parents, Mike and Krystine. Anakalia was born with a genetic disorder but is living a full life through successful care at Shriners Children’s Northern California. Photo by Mike Chapman for A News Cafe

This is an uplifting story about Anakalia Naretta, a courageous Redding teen who’s thriving thanks to her supportive parents, Shriners Children’s Northern California and thousands of online well-wishers.

Anakalia’s quick, charming smile belies all that she’s been through.

She was born with a genetic disorder that left her with fragile bones, a condition that’s required numerous visits to out-of-town health specialists and a half-dozen surgeries.

Prior to her birth at UC Davis Medical Center in Sacramento, an ultrasound revealed Anakalia already was experiencing fractures in the womb – not unusual for someone with the condition called osteogenesis imperfecta.

Despite schoolyard teasing in the past for her short stature and occasional disparaging comments on social media, Anakalia has bloomed into a strong-willed 13-year-old who’s flourishing with a promising future ahead of her.

“There’s always going to be mean people,” says Anakalia’s mother, Krystine Sanchez, who’s of Hawaiian descent. Anakalia is a Hawaiian name, similar to Andrea.

“As long as you feel pretty, you feel confident, it doesn’t matter what other people say,” Krystine said.

Can you guess that pink is Anakalia’s favorite color? Her hot pink brace matches her outfit. Photo by Mike Chapman for A News Cafe

While she describes her daughter as “really girly,” one Instagram follower called her a warrior.

While Anakalia faces limitations, she truly is a fighter. She doesn’t shy away from sports and at the same time, will dance her way through viral videos.

Typical teenage traits

Anakalia is a typical teen girl who’ll sit at her vanity before school to put on makeup, do her hair and fix her nails. She’ll tell you she loves fashion and “anything pink.”

She likes the musical artist Drake along with rap, hip-hop and pop. “Stuff you can dance to,” she said.

What’s not typical for Anakalia is that she’s growing up with the brittle-bone disease osteogenesis imperfecta Type III. OI is a genetic disorder that affects the body’s production of collagen and prevents the development of strong bones.

“Anakalia’s resilience shines through her frequent challenges,” Shriners Children’s Northern California representative Kelsey Morgado said. “Despite facing multiple bone fractures and spinal deformities, she continues to face each obstacle with remarkable bravery,” Morgado said.

Anakalia also was under a doctor’s care for scoliosis, a curvature of the spine. She’s undergone several successful surgeries at the Shriners Children’s Northern California medical center in Sacramento with the latest taking place in February.

Most children inherit the rare condition, which can limit one’s height and result in deformed bones. For Anakalia, she inherited OI from her father, Mike. It so happens that he also was treated for the condition at Shriners Children’s Northern California.

“I’ve been through almost all of the same things she has,” Mike said in a recent Shriner’s article about Anakalia.

Anakalia goes outside with her halo traction device with parents Krystine and Mile while being treated at the Shriners Children’s Northern California facility in Sacramento. She was in the traction for four weeks before additional surgery. Photo courtesy of Shriners Children’s Northern California

Social media star

While Anakalia may lack a normal-functioning collagen gene, you could say she makes up for it with DNA for happiness and joy.

It would be understandable for young OI patients to feel discouraged and withdrawn. But Anakalia is more of the outgoing type. She willingly shows a visitor the long scar down her back from spinal-fusion surgery earlier this year.

Anakalia’s personality shines through with the dance videos she’s posted of herself happily twirling in place with her head attached to a medical traction device.

“In the whirl of life, be the spin that stands out,” she announces on Instagram. One of those videos went viral, attracting some 9 million views.

Anakalia posts as oi_am_kalia on Instagram and TikTok. She’s created GRWM (Get Ready with Me) videos as part of her blogs. She’s also social media savvy by running an Amazon storefront where she can earn commissions for her hair, skin care and makeup recommendations.

People tell Anakalia her skin is going to be immaculate from all her skin-care routines.

“When you get to be older age, you won’t have any wrinkles,” Krystine tells her.

Anakalia has fans all over the globe among her 47,000 Instagram followers. Sometimes she needs to translate comments in foreign languages to find out what people are saying about her.

Anakalia’s diminutive stature results in the online question she’s asked the most: Her age. Weary of saying how old she is, Anakalia will steer them to her online blog for personal details.

Being a teenage creator online is not without its drawbacks. She’s been teased online, where Anakalia’s mother also has access as a monitor. People have criticized Anakalia by saying she’s too young to blog about makeup or create dance videos.

“People are going to say nice things and then there’s people who are going to say mean things,” Krystine said. “We’re like, whatever, just ignore them. She’ll respond to some of them.”

She says the negative comments just roll off her daughter’s back.

Other youths with OI consider Anakalia as a role model. She says she’ll often write to them to cheer them up.

Proud of her parents

Anakalia just finished seventh grade at Turtle Bay School. She embraced sports by playing basketball and volleyball, and was on the cheerleading squad.

Krystine said coaches would accommodate her during PE and sports.

“So instead of doing a full lap around the basketball court, she would do half a lap. And if she got too tired while playing, she would let her coach know and then her coach would pull her out,” the mother said.

Anakalia will wear her upper body brace (in her favorite hot pink color of course) while going to school or out in public when she walks a lot.

Krystine Sanchez, left, talks about her daughter, Anakalia, as father Mike looks on.

Anakalia says she’s proud of her parents because Krystine and Mike have always pushed her to live and enjoy life as if she didn’t have the brittle-bone affliction.

“I’m grateful for that because I wouldn’t be doing all the things that I love to do, like basketball,” Anakalia said.

Krystine says she and her husband always try to make sure Anakalia lives a normal life. When she’d suffer a fracture in the past, a local hospital would place her in a splint and wrap her up for a trip to Shriners. She would usually spend a month in a cast until the bone healed.

“We don’t want her to feel like she has to live in a bubble. You try to be super safe – you can get hurt either way,” Krystine said. “If you want to try that, go try that. You want to play basketball, go play basketball,” she said.

Mike said that’s how his parents were with him.

“I used to go ride my bike around town with my friends and race BMX and skateboard,” he said.

Standing about 4 feet tall, Krystine said Anakalia is shorter than the average 13-year-old but that doesn’t hold her back. The average height of a girl her age is up to 5-foot-4.

“She still goes out there and tries to do things like most kids her age would do,” Krystine said. “She’s very social. She talks to everyone.”

Being around doctors and other medical professionals much of her life likely influenced Anakalia’s future plans.

“I want to be a pediatric doctor,” she said.

Visits to Shriners

Dr. Rolando Roberto (a.k.a. Dr. Ro) and Anakalia are all smiles during a follow-up visit to the Shriners children’s hospital. Photo courtesy of Shriners Children’s Northern California

Anakalia’s most recent surgery and halo-traction treatment was led by Shriner’s chief of orthopedics, Dr. Rolando Roberto, nicknamed Dr. Ro. He specializes in pediatric spine cases.

“I always wanted to take care of kids. I trained in Chicago and was at the Chicago Shriners, which was eye-opening in terms of what a great career it would be to take care of kids with orthopedic problems,” he said.

Anakalia holds a pin with a spine on it that she gives out when she serves as a patient ambassador for the Shriners children’s hospital in Sacramento. Photo by Mike Chapman for A News Cafe

Anakalia’s first visit to the Shriners hospital was when she was around 5, the doctor said. Dr. Ro said he first met her when she had recently been diagnosed with fractures in her spine.

Once children with OI start getting fractured vertebrae, the doctor said their spine will become curved because it collapses asymmetrically.

“Kids with OI, their collagen is abnormal and they make abnormal bones,” Dr. Ro said. “Collagen is in all of our tissues. It’s in our skin, it’s in our eyes, it’s in our muscles. It holds us together.”

Anakalia and her parents opted for the spine-straightening surgery to prevent internal organ damage.

“With the halo traction, we can use slow, steady traction to take really, really severe curves and stretch them out slowly,” the doctor said.

Anakalia wears a metal ring called a halo that gradually straightened her spine before more surgery. Photo courtesy of Shriners Children’s Northern California

The lightweight metal ring was surgically placed on Anakalia’s skull as a first step and then a pulley system on her bed, wheelchair and walker gradually straightened her spine.

“If you push too hard on the bones when you’re trying to correct them, they fracture and you don’t get what you want,” Dr. Ro said.

After four weeks in traction and then more surgery, Anakalia went from an 87-degree spine curvature to 34 degrees, better than everyone anticipated. A spinal curve of more than 60 degrees is considered severe.

Dr. Ro says Anakalia is “a tough kid.” He also describes her as outgoing and savvy with makeup.

“She’s like most younger folks. She’s good with social media and she’s at the age where the girls think a lot about the way they look,” he said. “She always looks super cute.”

He describes Anakalia’s family as “super sweet – good Dad, good Mom. Very caring people.”

Shriners operates on an endowment with a mission of not having a patient pay anything. “No co-pays, nothing,” Dr. Ro said. “As a physician, that’s a great feeling.”

Another Shriners doctor – Dr. Debra Templeton – performed Anakalia’s first surgery around 2015. In later years, Templeton placed rods in Anakalia’s legs for strength and stability.

“Debra’s a rock star,” Dr. Ro said. “She went to Stanford and threw the hammer there.”

Anakalia hasn’t broken a bone in her legs since.

Dr. Ro holds out hope for a future treatment for through gene therapy – giving children with OI a normal copy of the gene that makes collagen.

Promising future

Now that school is out, Anakalia will be like most kids. She’ll sleep in, probably have more sleepovers and go swimming. Krystine says the family has plans to take a boat out on the lake, go camping and visit the coast like they do every summer when it gets hot.

Anakalia saw her doctor in May for a checkup and Krystine says she shouldn’t need any more surgeries unless her surgical pins move or hardware in her body breaks.

“Other than than that, she should be fine,” Kyrstine said.

Recent X-rays showed her pins staying put and everything looking good in her spine. Her next appointment is in August.

Anakalia’s life expectancy should be normal because she has good cardiac and good pulmonary functions, Dr. Ro said.

“She’s a super, super kid – super supportive family. She’s going to do great,” the doctor said. “It’s really easy to take care of kids and families that are so caring for each other.”

 

Mike Chapman

Michael Chapman is a longtime journalist and photographer in the North State. He worked more than 30 years in various editorial positions for the Redding Record Searchlight and also covered Northern California as a newspaper reporter for the Siskiyou Daily News in Yreka and the Times-Standard in Eureka, and as a correspondent for the Sacramento Bee.

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