Nikki Christou, of the United Kingdom, was born with a malformation that has left a tinted bulge on one side of her face, but she hasn’t let the rare condition stop her from turning into a YouTube star.

“This has really interfered with my life,” Christou, 11, who suffers from high-flow craniofacial AVM (arteriovenus malformation), says in a YouTube video that has racked up more than 520,000 views so far. “I used to be in all the clubs at school, see my friends a lot, just lead a really perfectly normal life.”

In the video, Christou said she didn’t start experiencing symptoms until about five years ago. Initially, she had some pains and veins popping up on the right side of her face. She was referred to a specialist and diagnosed with an AVM. Nikki’s runs from the right side of her head down her face.

AVMs are rare, abnormal tangles of blood vessels in which arteries and veins connect directly— skipping the capillaries— and disrupt natural blood low, according to Houston Methodist. The appearance depends on the size of the blood vessel involved, and the area may have a pink-blue tint that can darken over time. The cause of AVMs is unknown, according to the National Institutes of Health. The greatest danger for patients is hemorrhage. Treatment can include surgery or focused radiation therapy.

Christou and her family started The Butterfly AVM Charity to raise funds for research. According to their website, the preteen has undergone 20 major operations and has had more than 300 hospital visits to manage her symptoms. The organization has raised over $229,000 so far.

On her Youtube channel, Nikki Lilly, she shares baking, shopping, makeup tutorials and other lifestyle videos with her audience of more than 38,000 subscribers. The most popular video, with over 900,000 views, shows Christou applying makeup to get ready for school.

More on this...