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 and that there is no known cure.
Meet Nicole, who is eight years old, lives with her family in Winchmore Hill and suffers from a very rare condition called AVM, Arteriovenous Malformations.
Since Nicole became ill two years ago, she has had more than 130 visits to Great Ormond Street Hospital, several major operations and emergency hospital admissions.
Nicole's mother Tanya describes her condition as "abnormal connnections between arteries and veins" . Nicole's AVM is one of the most difficult to treat, because it is on her face.
"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)".
When she was diagnosed, Nicole's father George began researching his daughter's condition online and "came across things that scared the hell out of me!". There is no known cure, the condition can lead to heart failure and because it is so rare (three in a million) the pharmaceutical companies are not invest much in researching the disease and developing treatments, becasue there are so few sufferers.
Whilst there was plenty of information about AVM available on the website, the Christous could not find a current support group, so they have decided to set up one themselves, together with a charity, The Butterfly AVM Charity, to raise funds for research into AVM, increase awareness of theis painful, debilitating and life threatening condition and offer support to other sufferers and their families.
In a little over six months since the charity was set up Nicole's family and friends have raised a staggering £30,000. This has enabled them to establish a research fund with the team at Great Ormond Street, which begins work this month (February 2013).
The Butterfly AVM Charity website explains this complex condition, brings together the latest information on AVMs and its treatment, stories about AVM sufferers and of course is central to their fundraising drive. It has given them something positive to focus on, through what has been a traumatic period of their lives, when they don't know what the future holds.
Nicole was rushed into hospital on Christmas Eve, where she stayed for ten days and has not been well enough to go to school for the first half term of 2013. They hope she will to rejoin, at least part time but are taking life one day at a time.
The Butterfly AVM charity needs the oxygen of publicity, if it is to continue to raise funds not just to help Nicole but also others suffering from AVM.
"Nicole 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.
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"
Can you make a donation to help this brave little girl and her family?
Can you help with fundraising?
Can you help spread the word about the Butterfly AVM Charity?
Registered Charity Number - 1149170