It’s the nightmare of every parent to find out that their child has an illness; let alone be told that the condition is incredibly rare (three in a million) and that there is no known cure.
Our beautiful daughter Nicole Lily was a seemingly normal, happy child enjoying life to the full when at the age of six large veins started appearing on the right side of her face. This was followed by swelling and terrible bleeds from her nose and gums. After many tests it was found that Nicole was born with a high flow craniofacial AVM (Arteriovenous Malformation).
In the last 5 years, Nicole has had 20 major operations and over 300 visits to Great Ormond Street to manage her symptoms. Nicole is now being treated at the Swedish Medical Centre in Denver by Dr Yakes,who uses ethanol as the embolic agent. Due to the rarity of her illness, there is a limited interest by pharmacological companies to invest into research to discover new medicines. Much needed specific research needs to be carried out in order for better treatments to be discovered in the hope that one day, we will find a cure for AVM’s and end the daily suffering of Nicole and so many other people in the UK, Ireland and around the world.
It is for this reason that my wife Tanya and I, with the help of our friends and family, started The Butterfly AVM Charity to raise funds for specific AVM research, increase awareness and support. We are the first specific AVM charity in the UK. To date we have raised well over £160,000 ! . Our Charity is currently liaising with Doctors and Researchers at Great Ormond Street Hospital and the University College of London (UCL) where this research is now taking place . We will also continue to have a dedicated AVM website and pursue other activities to help raise funds nationally so that our cause can gain momentum.
An AVM is an abnormal connection between arteries and veins which normally exists at birth and can appear anywhere in your body. In a normal functioning human, arteries carry oxygenated blood away from the heart to the rest of the body, and veins return deoxygenated blood to the lungs and heart. An AVM interferes with this cyclical process. Instead of the gradual transition through the capillaries, AVMs cause direct connections between arteries and veins. AVMs can cause intense pain and lead to serious medical problems. Although AVMs are often associated with the brain and spinal cord, they can develop in any part of the body; in Nicole’s case, an even rarer craniofacial form.
Nicole who is 10, is an inspiration to all that have had the pleasure of meeting her, and we are proud that she is our little girl. In the last year and a half she has experienced a life that no one should suffer, let alone a child full of hopes and dreams. Despite this, she is the bravest girl in the world and no matter how dark the clouds become, she always has a smile to brighten up our day.
Our Inspiration Gets a National Award
Nikki Christou was awarded The UK’S most Inspirational girl for her Bravery and Fundraising achievements in a start studded ceremony at London’s Dorchester Hotel . Nikki was given The Wellchild Award by Prince Harry who spoke to her about her life and also about his nephew Prince George .
Nikki Proudly Showing her National Diana Award received for Champion fund raising and for Children that are changing the world
Click on the links for more information on Nikki’s special night .
Please help us reach our goal and be a part of Nicole and so many other people’s dreams that one day, we will find a cure. Let’s not just wish for a cure and better specific treatments; lets make them a reality. It is not how much you donate, it is that you cared enough to press the button and give us hope.