A girl of eight whose rare brain disorder is likely to lead to her death when she is in her teens is taking part in pioneering stem cell research in a bid to save others with same condition. Lily Harrisss skin cells will first be turned into stem cells and then into brain cells by researchers at University College London as they seek treatments or a cure. About 100 to 200 cases of BPAN beta-propeller protein-associated neurodegeneration are known worldwide, although this is believed to be an underestimate. Children often suffer delayed development, sleep problems, epilepsy and lack of speech and their symptoms can be mistaken for other conditions. Lily, from Luton, was diagnosed when she was five. She has very limited communication skills and uses a wheelchair. She wakes four or five times a night and needs drugs to control seizures. However, she loves swimming and her father Simon said she has recently began singing on car journeys. Shes laughed and giggled her way through everything, and shes been through a lot, he said. Shes a beautiful little girl who can be quite naughty sometimes. Were giving her the best time we can while shes here. We have a … Continue reading
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