Following last year’s 10th Anniversary Ball, the Butterfly AVM Charity challenged itself to put on another spectacular evening for its growing band of supporters. 600 people filled the huge banqueting room at the Meridian Grand and raised over £50,000 to support the inspiring work of this unique charity. The spirit of the evening was captured very aptly by one of the guests, who said, “It felt like a gathering of a huge family who laughed, cried, and danced together for an amazing cause.”

Nikki Lilly, the inspiration behind the charity, melted the hearts of all those present with her courage to rise above the pain and debilitating obstacles that her facial AVM (Arterial Vascular Malformation) has put before her to achieve successes that are beyond the dreams of most people. Junior Bake-Off Champion, inspiration to her millions of followers on Tik Tok, You Tube, and Instagram. Nikki is in the Guiness book of records for the youngest ever recipient of a BAFTA for her incredible ‘My Life-Born to Vlog’ documentary, author – the list goes on! And she is only 19! This achievement is even more incredible as she as she has been able to navigate her life through around 100 operations and spend endless time in hospital! Despite all these achievements the driving force in her life as founder of the Charity is to help other sufferers by funding definitive treatments to lift the clouds of uncertainty from their lives.

As having an AVM is so rare it was testament to the growth and importance of The Butterfly AVM Charity that at least 10 guests from across the UK who were born with this condition attended. Listening to their courageous stories of having to live with such a debilitating unpredictable illness was an inspiration to all who attended. The Charity provides a light at the end of the tunnel and hope to AVM sufferers in the UK and around the world leading the way in funding research at the world-renowned institutions such as the Crick Institute, Royal Free and University College Hospitals.

The Charity also welcomed a new ambassador Jade Henderson, an AVM sufferer herself who overcame brain surgery to remove an AVM that resulted in her having to learn how to walk, talk, read and write again. Jade and Nikki will continue to raise awareness and inspiring others.

The Butterfly ball is a celebration of the achievements of the Charity and its fundraisers throughout the year who unselfishly go out of their way to raise money for Research so vital to finding definitive treatments and a cure. Winners this year included Lambros Hajilambi, Lauren and Steve Gale, George Keeley Anthony and Thalia Christou, Abi Phillips, Alex Christou and Karein Bowen. The prestigious prize of the evening “The Tina Award” In memory of Tina Josephides a dear friend of the Charity was presented by Tina’s children Elena and Natalie to Keith and Pauline Russell who overcame adversity and the tragedy of the loss of their son Jordan at the age of 26 from an AVM brain haemorrhage to raise an astounding amount of money for our Charity.

The Butterfly AVM Charity would also like to thank Cyplon Travel who donated a week’s holiday in the wonderful Four Seasons hotel in Limassol and CEX for a £1,000 electrical equipment voucher and seemingly endless raffle and silent auction prizes, all donated by the charity’s well-wishers. Marc Spelman, the famous magician, compered the evening and what an amazing evening it was!

Members of the outstanding band, Enthimion, also graced the night with their music, including the bouzouki wizard Chris, who donated one of his own hand-made bouzoukia for the silent auction. Along with DJ Tony, they packed the dance floor until the early hours, and helped to generate an atmosphere that will live long in the memory of all those who were fortunate enough to secure a ticket for this special evening.

This event would have in no way have been possible without the help of the Butterfly AVM Taskforce who unselfishly give up their precious time so the Charity can achieve its goals.
All the money raised by the Butterfly AVM Charity is used to fund research, raise awareness and support suffers and their families to find a cure and for those who suffer with arterial vascular malformations, a disease which truly blights the lives of all sufferers.

If you want to be one of the charity’s fundraiser or want to find out more information, please visit their website at or contact

As featured on the Parikiaki website

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