At the age of 6, Nikki Christou was diagnosed with a potentially fatal disfigurement, which caused bulging veins on the right side of her face. With tremendous courage however, she has overcome her own personal challenges, starting a YouTube vlog, and is now helping to inspire millions of people with her story.
Nikki Christou was a carefree 6-year-old from north London when she showed signs of a condition that would change her life forever. After her parents noticed veins popping out on the right side of her face, she was diagnosed with arteriovenous malformation (AVM), where there is an abnormal connection between veins and arteries. There is no cure for AVM. It can also cause intense pain, and can even lead to fatal nosebleeds.
In order to manage her condition, Nikki has been to the hospital hundreds of times, and has undergone 28 surgeries.
“It was a shock because at that age I didn’t have a care in the world”, Nikki told the Mirror. “I felt quite lonely because after it was diagnosed my friends still didn’t have a care in the world while I had to give up a lot of clubs and activities. I didn’t go to school very often and I felt isolated.” Nikki shared that sometimes, she wished she could just use face paint to cover the veins on her face.
She started her YouTube vlog one summer, two years after she had been diagnosed, while her friends were at some party, and she was left on her own. She shared her story and discussed her condition, and also offered makeup tips for people who had the same condition in order to help them to lead more of a normal life.
Amazingly, her vlog “nikki lilly” has now garnered nearly 207,000 subscribers, and over 4 million views. Her achievement was also recognized at the Daily Mirror’s Pride of Britain Award ceremony at London’s Grosvenor House Hotel, which was attended by guests as Prime Minister Theresa May, Prince Charles, and other celebrities. There Nikki accepted her award for Child Courage.
“It’s amazing I have so many followers”, said Nikki. “People contact me who have AVMs and other confidence issues and I want my channel to be a community where people find that they can imperfectly perfect in their own special way. I’ve found people who are my best friends now. It’s nice to know you’re not alone as you think.”
With the help of her family, as well as her new-found support, Nikki has raised over £400,000 (approx. $512,000) to help in AVM research at the Ormond Street Hospital, where she was treated, and at University College London. Because the condition was so rare, it was difficult for her to find treatment in the beginning. So, in order to support more people facing the disease, they started the Butterfly AVM charity.
“I want people who have an AVM in the future not to have to go through all the things me and my family and other AVM survivors have gone through,” she said.
“I’m not going to lie and say it doesn’t get me down or make me angry… But you can either be negative and not enjoy life or you can be positive and block out all the negativity in your life and live a lovely, healthy, joyful and happy life.”
Regarding her daughter, Nikki’s dad George had this to say: “Nikki is an inspiration to people round the world and many people with AVM have thanked her for giving them hope.
“She keeps laughing and smiling and that makes others think they can get out of the house and be proud of who they are.
“Nikki has given us a purpose in life and we are consistently amazed by her. She lost her childhood but treats every day as if it was the most precious in her life,” he said.