Ukrainian Mother Raises Child With Disease That Affects 60 People Globally

Five-year-old Kira lives in Kyiv, Ukraine with her parents. She enjoys dancing and painting and is learning to do things for herself. "She always needs to be in motion. Not sitting around," her mother, Nataliya Musyna, told Hromadske. But Kira's active and independent personality can also pose a risk, "She can’t fall, she can’t bump into anything," explained Nataliya. "Kira is the only one like this in Ukraine."

Doctors diagnosed Kira with progressive osseous heteroplasia (POH) when she was less than a year old. This rare genetic condition causes the body to form extra bone in places where bone should not form. For people with POH, falling or bumping into something can cause their skin to ossify.

According to her mother, Kira was born a perfectly healthy baby. "Like most people with her condition, the first bone appeared around five months later, on the inside of her elbow, and then another under her arm," Nataliya recalled. "They took three small pieces from her elbow for a biopsy and after two months her right arm had completely ossified."

There are only 60 known cases of this condition worldwide and Kira is the only one in Ukraine. The gene was discovered in 2002 and as of yet there is no cure. "It's very difficult to find a treatment for it, because they need to find a blocker that won't prevent the bones she needs from growing to their full size," Nataliya explained. "Every bruise takes ten years off me and her father's lives, and gives us a hundred grey hairs."

Kira's parents signed her up for art classes to help her learn how to do everything with her left hand, "Her left arm is longer than her right arm. Her right arm won't grow anymore and four of her fingers don't move," her mother said.

Nevertheless, Kira is very active and independent. "I dance and I draw. I'm home on Fridays," she told Hromadske. "I like to draw hearts because hearts mean love. And I love everyone!"

Kira's parents encourage her to be as independent as possible. "She eats, draws and dresses all by herself. She does it all with her left hand. I really make her do things for herself," Nataliya said. "When she says 'I can't' I tell her 'you can Kira, and you have to.' And so she does everything herself."

When Hromadske's correspondent asked Kira where she lives, she replied: "On happy street."

Kira's mother doesn't dress her any differently in the summer. "I dress her in t-shirts and dresses with short sleeves, so she isn’t shy about her scars, and she won’t be shy about herself," Nataliya explained. And it seems her parents' confidence in her has paid off.

"If Kira does something she really does it her own way. She's a princess," Nataliya said. "When curious mothers and children ask her what's wrong with her arm, she says 'I was born this way, but when I'm healed I'll run just like you.'"

/Text by Eilish Hart