Nikki Lilly is a remarkable young woman whose journey has touched the hearts of many. Born as a seemingly healthy, happy child, Nikki’s life took a dramatic turn when, at just six years old, she began experiencing unexplained changes in her appearance. Large veins appeared on the right side of her face, followed by facial swelling, frequent nosebleeds, and bleeding gums. After undergoing numerous tests, Nikki was diagnosed with a rare and complex condition known as a high-flow craniofacial arteriovenous malformation (AVM)—a tangle of abnormal blood vessels that can cause severe health complications.

Since her diagnosis, Nikki has faced an incredible number of challenges. Over the years, she has undergone nearly 100 major surgeries and made more than 350 visits to Great Ormond Street Hospital for ongoing treatment and care. Currently, Nikki is under the expert care of Mr. David Dunaway, Head of the Craniofacial Team at Great Ormond Street, and works closely with specialists across various disciplines, including ophthalmology, ENT, and interventional radiology.

Despite the severity of her condition, Nikki has demonstrated extraordinary strength, resilience, and positivity. Her daily fight against this life-limiting condition has not only made her a source of inspiration to those around her, but it has also made her a powerful advocate for others living with rare and complex conditions. Nikki is dedicated to raising awareness and supporting vital research into AVMs. Unfortunately, due to the rarity of her illness, pharmaceutical companies have been slow to invest in research for effective treatments. Nikki and her family are committed to changing that, hoping that one day new treatments and, ultimately, a cure will be found.

Nikki’s story has been one of courage, advocacy, and achievement. At just 20 years old, she continues to inspire millions through her social media presence, where she shares her life, challenges, and victories. Her journey has garnered recognition and numerous accolades, including:

• The WellChild Award for Courage (2013), presented by Prince Harry
• The Princess Diana Award for Exceptional Bravery (2014)
• The Pride of Britain Award for Child of Courage (2016)
• Winner of CBBC’s “Junior Bake Off” (2016)
• Nominated for a BAFTA for her work on the CBBC series “My Life: Born to Vlog”
• Winner of the 2018 Emmy Award for Best Factual Program
• Japan Grand Prix Award for her documentary work

In addition to her media achievements, Nikki has worked tirelessly to raise awareness for other causes close to her heart, including:

• Ambassador for Changing Faces, a charity supporting people with visible differences
• Ambassador for Jeans for Genes, helping to raise funds for genetic research
• Host of CBBC’s “Nikki Lilly Meets” and “Nikki Lilly Bakes”

Nikki was also honored as the youngest recipient of a BAFTA in 2018, and her incredible achievements have earned her a place in the Guinness Book of Records. But beyond the awards and recognition, it is Nikki’s spirit, kindness, and determination that make her truly exceptional.

As a family, we are endlessly proud of Nikki—our beautiful daughter, who continues to break down barriers and inspire others. She is a true beacon of hope for those facing similar challenges. Through the Butterfly AVM Charity, we are dedicated to advancing research, improving treatments, and ultimately finding a cure for AVMs, so that Nikki and others like her can live free from daily suffering.