This Inspirational Influencer Is Bravely Conquering Her Rare Disease

Nikki Lilly is taking over the world at just seventeen. After becoming a Youtuber at eight years old, Lilly became a TV presenter, author, and charity campaigner. 

Lilly has an incredibly rare condition that causes swelling in half of her face. Since her diagnosis, she has grown to be an extraordinary, accomplished young woman. 

But through it all, she’s stayed humble. As Lilly’s TikTok bio reads, “I look different, but I’m the same as you.

Her Life Changed At Six Years Old

Nicole Lilly Christou was diagnosed with arteriovenous malformation at six years old. AVMs occur when a group of blood vessels forms incorrectly. Only 12% of people with AVMs have symptoms. 

There is no known cause of AVMs, though some could be genetic. Lilly has a high flow craniofacial AVM. It affects the left side of her face and can occasionally cause life-threatening nosebleeds. 

Having been so young, Lilly told Enable that she “did not really understand that [her AVM] was going to be a lifelong problem for [her]. [She remembers]…three doctors talking to [her] parents and [her] mum starting to cry.” 

Lilly has had more than 70 surgeries since her diagnosis. She’s visited Great Ormond Street over 350 times just to manage her symptoms.

Finding A Form Of Escape

After her diagnosis, Lilly had to stop all physical activities, including ballet, dance, and football. “I really missed my friends,” Enable wrote. “I was so sad and lonely, all I kept thinking was, ‘Why me?’” 

Lilly’s parents saw their daughter’s need for a connection with the outside world—an escape. So, when Lilly began making Youtube videos at eight years old, her parents were hesitant but optimistic. 

Lilly’s Youtube channel currently has 1.22 million subscribers. Her first video was an Over the Rainbow cover. Later, she moved on to make-up, baking, mental health, and chronic illness. 

“I showed my world to the outside world, and my friendship with my subscribers grew,” Lilly told Enable. “I think Youtube helped me in ways I never thought it could! It gave me a voice and purpose.”

Doing Bigger And Better Things

In turn, Lilly’s Youtube videos gave her followers a voice and purpose, too. Lilly uses her platforms on Youtube and TikTok to bring awareness to and empower those living with a ‘visible difference.’ 

In addition to her thriving Youtube channel, Lilly has a long list of accomplishments. She won the fourth series of Junior Bake Off in 2016. That same year, she became the youngest recipient of the BAFTA Special Award. 

Lilly is a brand ambassador for Jeans for Genes. She also stars in CBBC’s Nikki Lilly Meets. In the series, Lilly interviews celebrities and public figures. She has interviewed Mel C, Steph Houghton, and Theresa May. 

In 2016, Lilly received the Child of Courage award at the Pride of Britain Awards. She also won the Princess Diana Award for Exceptional Bravery in 2014. A year earlier, she won Prince Harry’s WellChild Award for Courage.

Helping Others Find Courage

Lilly and her parents knew the dangers of being in the spotlight. “As soon as you put yourself online, you’re exposing yourself to the whole world,” she told BBC in 2019.

“So, you’re going to get the positives with the negatives,” Lilly continued. “Even the most beautiful girl or guy in the world is always going to get something. Ugly is such a thrown-around word.” 

Lilly’s confidence was the lowest shortly after her diagnosis. She says she was more affected by hurtful comments back then. But after building her Youtube channel, she has built back her confidence. 

She shared these struggles on her channel to help others. “I feel that it’s important to be able to talk to someone if you are depressed or being bullied,” Enable wrote. 

“All too often, a person suffers in silence. In my videos, I try to highlight the idea that it is okay to feel vulnerable and to feel and look different,” Lilly said.

Giving Back With Butterfly

Given that Lilly’s condition is so rare, her parents struggled to find helpful resources. The Christou family created the Butterfly AVM Charity to help other families living with AVMs. 

“Due to the rarity of her illness, there is limited interest…to invest or research the condition,” the Butterfly website reads. “Specific research is required for better treatments to be discovered.” 

“I set this website up in a determined effort to raise awareness,” Lilly’s father said. The Butterfly AVM Charity documents research findings and provides sufferers with much-needed information.” 

The charity has raised hundreds of thousands of pounds for AVM research. “I am very proud to be part of the charity,” Lilly said. “I hope that one day, we can find better drug treatments and even a cure. We are a small charity with big dreams.”

Overcoming AVM

Luckily, making big dreams come true seems to be Lilly’s specialty. The seventeen-year-old has already accomplished so much. There’s no doubt she’ll continue to break the mold. 

Because to her, it’s a no-brainer. “I think it’s so important to be yourself,” she told BBC. “Why should you fit this mold of how you should be, act, or look?…If we lived in a world where everyone looked and acted the same, it would be a really boring world.”

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