Vici syndrome appeal | Action Medical Research

Vici syndrome

Together we can help unlock new treatments for children fighting this life-limiting disease

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Vici syndrome is a devastating rare disease that has a profound impact on children’s lives.

Children will often suffer from a variety of symptoms including heart problems, delayed development, progressive deterioration of the nervous system, seizures, and repeated infections. Currently, there is no cure – and tragically, most children with Vici syndrome do not live beyond their fifth birthday.

But there is hope. Researchers at University College London have made an important discovery that could lead to new effective treatments to help reduce the heartbreaking impact of this condition, but we urgently need help to raise £10,000 to drive this research forward.

So please support us today if you can. With your help, we will NEVER stop fighting for children with rare diseases – thank you.

Together we can help fight Vici syndrome

100% of your donation will support the researchers at University College London as they investigate a new way to treat this devastating disease

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Your donation of £10 can help save and change children's lives.

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We’d love to keep in touch and show you how your support is helping to save and change children’s lives through medical research. We will also let you know other ways you can get involved, through fundraising, volunteering, or taking part in events.

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Searching for a new treatment

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

Learn more

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.

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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

Read Emmy's story