Lily's story - living with BPAN
As a key element within our annual rare disease fundraising campaign, Lily's story shows the heartbreaking impact of devastating, rare condition beta-propeller protein-associated neurodegeneration (BPAN) on one little girl and her family.
BPAN affects the nervous system and, sadly, children with BPAN develop a range of distressing symptoms. These include physical disabilities, symptoms of Parkinson’s disease and dementia. And BPAN is a life-shortening condition.
But this film is about hope, too: supported by children’s charity Action Medical Research, Dr Apostolos Papandreou of University College London and his team are working hard to find out more about this cruel disease and take vital steps towards developing treatments.
Dr Papandreou says: “The parents I’ve met understandably feel devastated at the prospect of their children having a progressive disorder; however, they’re also really keen to explore new avenues, hoping to find answers for their loved ones and for others, which I find truly inspiring.”
Lily's dad Simon is incredibly proud of his daughter for taking part in this research to help other children one day in the future. And, he says, however hard the present may be, his ‘happy-go-lucky little girl’ will only ever know love.
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