'Try your best to live limitlessly,' Nikki Lilly: Finding Joy, Creativity and Visible Differences

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I’m Fine hosted by Jean Campbell meets Nikki Lilly - award-winning creator, British charity campaigner, social media personality, model author and founder of the Butterfly AVM Charity. In this episode Nikki shares her experience growing up with a rare and life-threatening AVM, she explains what this is and how she navigated childhood between hospitals and surgeries, how living with chronic illness that has shaped her identity, how she has shaped her outlook on life and how she found escape, joy and creativity. From launching her YouTube channel to becoming a powerful voice for representation, Nikki reflects on visibility, vulnerability, and the support and quiet strength that inspires her. This honest and intimate discussion explores resilience and choosing to live fully, even when life looks nothing like you imagined. From beauty as armour, creativity as survival to compassion and the importance of play, rest and meeting yourself where you are this is a powerful reminder that living fully doesn’t mean living perfectly.

Nikki had a carefree childhood, until she was diagnosed with AVM aged 6 when her world flipped upside down and went from a normal childhood to hospitals, surgery, home. But Nikki is extraordinary not ordinary - in 2012 the Butterfly AVM Charity was founded, in 2013, then aged only eight, she started to share her experiences of living with a 'visible difference' on YouTube covering life with: chronic illness, bullying, mental health, baking and beauty. She has won many awards for her courage, her cooking and creativity. In 2016 she won CBBC’s Junior Bake Off and presented the CBBC show ‘Nikki Lilly Meets’. In 2019 won an Emmy for ‘Best Factual Programme’ and was the youngest ever recipient of the BAFTA Special Award. In 2020 she published her first book, ‘Nikki Lilly Come on Life: Highs, Lows and How to Live Your Best Teen Like’. In 2024 she became a patron of Face Equality International, an alliance of Non-Governmental Organisations (NGOs), charities and support groups which are working at national, regional or international levels to promote the campaign for ‘face equality’. In 2025 Nikki spoke at the United Nation Human Rights Council about her experiences of facial differences and was honoured as ‘Fashion and Beauty Creator of the Year’ on TikTok, partnered with L’Oreal at the Cannes Film Festival and was one of the first people with a facial difference to walk a show in Paris Fashion Week, with Vogue calling it the most powerful moment of the show and at the end of 2025 announced her podcast ‘Live a Little’ where she talks about the in-between of modern life, where you can have a lot on but still wondering if you are missing something deeper.

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

About I’m Fine:

I’m Fine is a Podcast hosted by Model, Writer and Mental Health Advocate Jean Campbell it’s a safe space and platform where high-performance people talk honestly, often humorously, about their life experiences and healing as Jean explores the inner world behind their outward success.

With Very Special Thanks to Nikki Lilly
https://www.instagram.com/nikkililly/?hl=en
https://www.butterflyavmcharity.org.uk/nikki-lilly/
https://www.cadence-talent.com/

Technical Production Copperbeach
Social Media Ruby Fern
Creative Produc