Marlborough TikTok star, 11, with rare health disorder has earned millions of fans

MARLBOROUGH — Vitoria Bueno says she’s a little shy, but you wouldn’t know it by her online presence.

Vitoria is a TikTok star at age 11, with 1.2 million followers and counting. Her handle, @grwms.by.vitoria, gives fans a steady supply of tips on how to make a wide assortment of things, like goopy slime.

“A lot of different stuff,” Vitoria said, but what she’s known for is her Get Ready with Me videos that give makeup and beauty tips, including how to get the perfect hairstyle.

The stage for Vitoria’s videos isn’t a plush recording studio. It’s her bedroom in Marlborough, where Vitoria recently slipped into a comfy swivel chair in front of a drawer chock-full of her beauty supplies.

Then she flipped a switch that turned on bright lights on a rectangular mirror, pointed her mobile phone in her direction, and that’s it. That’s how she records her popular makeup and hair videos.

Lifelong challenge

Pretty normal stuff for a full-fledged TikTok influencer, but there’s a lifelong challenge in Vitoria's world.

She was born with osteogenesis imperfecta, a genetic and inherited bone disorder. Known as brittle bone disease, osteogenesis imperfecta causes bones to break easily and regularly. An estimated one out of 12,000 to 15,000 babies has the disorder, equally affecting boys and girls of all races and ethnicities.

There is no cure.

Dr. Errol Mortimer, an orthopedic surgeon at UMass Memorial Health, has treated Vitoria for the past nine years. “She’s like a favorite niece. We have a very close relationship. She knows me better than I like,” said Mortimer with a laugh.

He classified Vitoria's case as Type III, a severe form of the disorder. It often means a child is born with multiple fractures and deformities from intrauterine fractures that are already starting to heal.

“The bones are very fragile and fracture with minimal stress,” said Mortimer of Type III.

Mortimer has treated more than a dozen patients with the disorder, and of that group, none lived beyond their mid- to late 40s.

50 breaks,13 surgeries

Vitoria didn’t inherit the disease from her parents, said Mortimer. She has a genetic mutation, and Vitoria estimated she’s broken at least 50 bones and had 13 surgeries. The most recent surgery was to straighten her spine, because she has scoliosis. It was done at Boston Children’s Hospital, where Bueno spent 30 days in traction to prepare for the procedure, according to Mortimer.

What causes bones to break in many cases of osteogenesis imperfecta is the disruption of collagen production, a protein that gives support to skin, muscles, bones and connective tissues.

Mortimer has performed numerous surgeries on Vitoria over the years, including what he called “life-altering surgeries” that inserted telescopic rods into Vitoria’s femurs and tibias. The rods, he said, are the difference between using the assistance of a walker or not walking at all for patients, like Vitoria, who have recurrent bone fractures and angular deformities.

The family established a GoFundMe account to raise money for Vitoria's care. To date, more than $700 is donated, with a goal to raise $25,000.

Short stature

Besides brittle bones, short stature is another mark of the disorder. Vitoria is 2 feet, 10 inches tall, compared to just under 5 feet for the average 11-year-old preadolescent female. Mortimer expects Vitoria to reach 3 ½ feet, if all goes well.

She weighs 27 pounds, while the average for a female her age is 90 to 100 pounds.

Sitting in front of her drawer packed with makeup containers, Vitoria said it can be frustrating when people assume she’s much younger because of her size. But she didn’t dwell on it, rising from her makeup drawer to hold onto a chair with four wheels that gives her the freedom to scoot around her home.

A sharp mind

Vitoria is bright. She can recite her medical maladies in detail, and science is her favorite subject at school. When asked if she gets all A's, a shy smile appeared, a possible sign that Vitoria's too modest to admit she’s getting top marks.

School does come with some limitations, like not being part of gym class because it could lead to more fractures.

“I’m really careful in everything I do,” she said.

However, it's not stopping her from living her life. Besides her TikTok videos and time spent with friends and family, Vitoria has a devoted four-legged friend, Toby, the family’s Pomeranian.

Vitoria’s father, Edson, proudly displayed some of his daughter's TikTok videos on his mobile phone, especially the ones with views that number in the millions. “It’s hard to see (Vitoria) in pain,” he said in Portuguese as Vitoria translated, “but from another side, we're happy that’s she like this.”

Her mother, Maria, also worries about her daughter’s pain and acknowledged that Vitoria is “very strong” and “recovers fast.”

The family moved to the U.S. from Brazil when Vitoria was 2 to access better medical care, and Maria left her job to take care of Vitoria full time.

"It’s really hard,” said Maria as her daughter interpreted. “There’s a lot of surgeries and broken bones. My daughter needs to stay with me, but I’m happy to have Vitoria, of course.”

Room rules

An only child, Vitoria relies on her parents, but like any preteen, she wants her space. On her door is a handmade sign that says to knock first before entering, along with a few “room rules.” One is “If you make a mess pls clean it up and if you played but didn’t make a mess you still have to clean up because you still played!!

Other rules include “No jumping on the bed!,” “Be careful!!” and “Be kind!”

Smart with an independent streak, Vitoria has a definite path laid out for the future. She wants to help people suffering with osteogenesis imperfecta and scoliosis.

"I want to do surgeries and take care of people like me.”

Whether or not that happens, Mortimer sees exciting possibilities in Vitoria's future.

“Her condition is profoundly disabling, and Vitoria has done a remarkable job overcoming both the medical and social obstacles, and has done it with such class and finesse. You have to think that the sky is the limit when it comes to her potential.”

"Whatever profession she ends up in, she'll make an outstanding contribution."

Contact Henry Schwan at henry.schwan@telegram.com. Follow him on X: @henrytelegram.

This article originally appeared on Telegram & Gazette: Marlborough girl, 11, with osteogenesis imperfecta a TikTok star