Vitória Buenoan 11-year-old girl, has a rare syndrome known as “osteogenesis imperfecta” or “glass bones“. To date, she has suffered almost 50 fractures and undergone 13 surgeries, according to her family, including the implantation of metal rods in her arms and legs to maintain the alignment of her bones. The little girl’s story was told this Sunday (28 ), in a report by Fantástico, on Globo TV.
Vitória and her parents, Vânia and Edson, had to move from Brazil to the United States, almost nine years ago, to have access to the most appropriate treatment for the girl. Her case is being monitored in Boston by doctor Errol Mortime. “A child like her, without surgery, would never walk. […] But she is developing, in many ways, much better than other children in her situation,” said the professional.
The syndrome impairs growth. Therefore, although she is 11 years old, Vitória is only 90 centimeters tall, and should reach, at most, 1.20 meters when she is an adult.
“Vitória has a very severe form of osteogenesis imperfecta. There are several different types and hers is type three, which means that the bones break very, very easily. If we don’t treat it preventively, she will live only wearing a plaster cast”, he adds. Mortime.
In the report, the girl also shared what it is like to live with the syndrome. “I know I broke [algum osso], then I scream, I talk. Sometimes my mother hears the crack. You can see why I’m crying,” she blurted.
However, on social media, Vitória inspires by sharing the way she faces each stage of the treatment. She is almost always excited, especially when she has her walker, which allows her more independence. “I can go forwards, backwards, sideways, to the other, and I can also run to my parents”, she celebrates.
On one social network alone, Vitória has more than a million followers — the majority from the United States. She herself records the videos she publishes, in addition to choosing the scenes and subjects — she talks, for example, about her beauty care routine.
The success on the Internet came after the publication of a dance at the end of last November. There were more than 100 thousand views in just a few hours, and now there are almost 70 million views. She has even risked a little dance without the support of her walker.
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Osteogenesis imperfecta
According to the girl’s mother, Vânia, she was in her sixth month of pregnancy when she was informed that her baby could die before birth or early in life, due to the diagnosis of “osteogenesis imperfecta”, a syndrome known as “bone of glass”. “The doctors told me she couldn’t survive,” her mother recalled.
The syndrome is caused by genetic mutations that affect the production of collagen, the substance that supports bone cells. Without protein, bones become more fragile and, with successive fractures, end up deforming.
Orthopedist Timothy Hresko, from Boston Children’s Hospital, and professor at Harvard University’s medical school, further explained that Vitória had severe scoliosis that affected her balance and bent her ribs, putting pressure on internal organs, especially her lungs. And, to improve the girl’s quality of life, titanium rods were implanted, which were screwed into her spine to make it stable and aligned.
“In a school of one to ten, the complexity [do caso] it was ten, but she is an incredible girl, who made the recovery easier”, assured Hresko.
The syndrome has no cure, therefore, Vitória must remain under treatment. However, she is already making plans for the future and reveals that she wants to be an osteogenesis imperfecta doctor and a “scoliosis doctor”.