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Vici syndrome appeal

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Researcher in lab

Searching for a new treatment

Learn more about the project at University College London that could improve the outlook for children with Vici syndrome

Vici Syndrome film

Watch mum Ellie bravely share her story with her daughter Emmy who has Vici syndrome, and hear from Professor Michael Duchen as he explains in more detail about what the research hopes to achieve. 

Emmy in the garden with Mum and sister

Emmy's story

Emmy was just three months old when tests revealed she had suffered changes to her brain which meant she couldn’t see and had difficulties with her movement and muscle tone. But it wasn't until Emmy was 18 months old that the most serious diagnosis was made – when genetic tests showed she had Vici syndrome. 

Now two years old, Emmy is blind, tube-fed, suffers from epilepsy and is unable to walk or talk. Her care is complex and thinking of the future is daunting for her parents.

I hope we’ll have longer with Emmy than those worst-case predictions, and that things will be easier and happier. I hope that Emmy is not in hospital, that she is well and alert and expressing enjoyment at the things we do with her and her surroundings.”

Ellie, Emmy's mum