The Butterfly AVM Charity

821. Nikki Christou (London)

Nikki Christou, aged 13, from London, is a social media star who video blogs her experience of living with life-threatening AVM (Arteriovenous Malformations) and uses digital platforms to share information on how to cope with a chronic illness.

Through talking about her condition, offering advice for people with deformities and delivering makeup tutorials, Nikki has attracted millions of views and over 250,000 subscribers. Her public display of bravery, despite undergoing 28 facial operations and 300 visits to hospital since being born, is inspiring each of her viewers and followers. Additionally, with the help of her parents, she founded the ‘Butterfly AVM Charity’ that has so far raised £500,000 for research at Great Ormond Street Hospital and University College London. Last year she was presented with a ‘Pride of Britain Award’ by Prime Minister Theresa May in Downing Street.

In a personal letter to Nikki, Prime Minister Theresa May said:

“By sharing your experience of living with Arteriovenous Malformations on social media and in online videos, you are an example of hope and positivity to each of your hundreds of thousands of fans, and particularly those who also have the condition. Your fundraising for the ‘Butterfly AVM Charity’ is having a transformational effect on the scientific research that is being undertaken in this field and you should be very proud indeed of achieving this at such a young age.”

Nikki said:

“I am really honoured to have been chosen for such an amazing award. My AVM has taught me to make the most of everyday. I started ‘The Butterfly AVM Charity’ to raise money to support and inform sufferers and their families about this rare illness and to establish potentially life-saving research. This could not have been achieved without the help of so many volunteers who I thank from the bottom of my heart. I also try to show people that facial differences and disabilities should not stop a person from enjoying their lives to the best of their ability and achieve their dreams without any prejudice. We are all imperfectly perfect in our own way. Close your eyes make a wish – open them and make that dream a reality.”

 

The daily Points of Light award recognises outstanding individual volunteers - people who are making a change in their community.

Volunteer now

Search winners