Nikki’s Story

Our beautiful daughter Nicole Lilly was a seemingly normal, happy child enjoying life to the full.  Suddenly, at only six years of age, large veins started appearing on the right side of her face.  This was followed by facial swelling and terrible bleeds from her nose and gums.  After many tests it was found that Nicole had been born with a high flow craniofacial AVM (Arteriovenous Malformation).

Over the last 7 years, Nicole has had 70 major operations and has visited Great Ormond Street more than 350 times, just to manage her symptoms.

Nikki is now being treated at Great Ormond Street Hospital by Mr David Dunaway who is Head of the Craniofacial team. He also works closely with the multidisciplinary teams of ophthalmology, ENT and Interventional Radiology.

Due to the rarity of her illness, there is limited interest by pharmacological companies to invest or research the condition in order to discover new medicines.  Specific research is required in order for better treatments to be discovered in the hope that one day a cure is found.  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.

Nicole, now 15 (2019), is an inspiration to all that have had the pleasure of meeting her, and we are just so proud of our little girl.

Since being diagnosed Nicole, also known as Nikki Lilly, has become a social media sensation and has been honoured with the following:

• The WellChild Award for Courage by Prince Harry in 2013.
• The Princess Diana Award Exceptional Bravery 2014.
• The Pride of Britain Award for Child of Courage 2016.
• CBBC award winning program “My Life Born to Vlog”
  • Nominated for a Bafta
  • 2018 Emmy Award for best factual program
  • Japan Grand Prix Award

During this time she has also participated on:

• 2016 The Junior Bake off
• Prince William’s Stop-Speak-Support Campaign
• Ambassador for The Changing Faces
• Ambassador for Jeans for Jeans
• CBBC’s Nikki Lilly Meets

One for the future, Nikki has been shortlisted for a National Diversity Award as a Positive Role Model

There is so much we can say about Nikki, but I think those below say it best…

“What an incredible young lady.  Her condition is an enormous challenge for her to deal with, but she does it with incredible resilience, humour and a personality that shines like a diamond.  She always thinks of others too.  Absolutely inspirational”.
Pride of Britain Judges

“I think you’re really an inspirational young women who is doing fantastic things.”
Theresa May