George

“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.

You can read the full story here.

A huge thank you to the Ipsen Foundation who have helped us put together this short film about MVA. We are extremely grateful for your time, help and creativity. We hope 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.