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“We were told nothing could be done, but with the right people and bold decisions, we changed the outcome.” – Jonathan

At just two years old, George was diagnosed with a rare liver cancer – rhabdomyosarcoma – and an ultra-rare genetic condition, Mosaic Variegated Aneuploidy (MVA) Syndrome.

With determination and the support of experts like Professor Anil Dhawan, George underwent a pioneering two-stage operation using Nano Knife Technology – becoming the first child in the UK to receive this treatment on the liver. Today, George is fit, healthy, and thriving.

A huge thank you to the Ipsen Foundation who have helped us put together this short film about MVA. The film helps explain the challenges of an ultra-rare disease diagnosis, living with such a rare condition and the ‘grit’ needed to search for a treatment.