Parents of kids with childhood dementia plead for UK treatment and funding - 'We don't have time to wait'

Detailed summary

EXCLUSIVE: Some families are searching for a place on a clinical trial while others face raising millions for treatment abroad. Parents told the Mirror they're urging to government to act now

Parents of children with childhood dementia are racing against time to save their children’s lives as they make a desperate appeal for the Government to fund research and help them access treatment in the UK.

Ahead of World Sanfilippo Awareness Day on 16 November, families spoke to the Mirror about why they want childhood dementia to be recognised in Government policy. They fear their children “don’t have time to wait”.

Georgia Nonas, 29, launched a petition in an urgent bid for the Government to fund FAYUVI (rebisufligene etisparvovec-hopf), which was approved in the US in September. Her son Cody Carroll, 9, was three when he was diagnosed with type A Sanfilippo but was given little hope when no treatment was available. Now, with the recent news of approval, she is fighting to save her son’s life.

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In her appeal to the Government, she told the Mirror: “The petition was a way to say please take notice of us, we’re here and we need help. These children don’t have time to wait. A lot of us parents are struggling because we have all this hope and campaigning to get it approved, but once it’s approved, you’re in limbo because no one knows how to go at it. You feel some of that hope is lost because where you live is determining if these children are going to live or die.”

Sanfilippo syndrome is a rare inherited disorder that mainly affects the brain and nervous system. It is better known as childhood dementia and can gradually take away skills such as speaking, walking and eating independently. Life expectancy varies but some children aren't expected to live past their teens while people with slower-progressing forms can live into adulthood.

Researchers estimated that 204 people in the UK die from conditions that cause childhood dementia per year, similar…

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