Girl diagnosed with 'one in a million' disorder
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Nine-year-old girl has 'one in a million' BPAN disorder

A mother said she was "devastated" when she was told her daughter had a rare genetic disorder that only affects about 100 people worldwide.

Nine-year-old Heidi Cooke, from Leicester, was born with BPAN (beta-propeller protein assisted neurodegeneration), a disorder only identified by researchers in 2006.

Her mother Kerry said the condition, likened to Parkinson's disease, means Heidi has limited mobility and speech, and may die before reaching her 30s.

Ms Cooke is now training to be an occupational therapist at the University of Northampton, in order to care for her daughter and help others in the UK who are diagnosed.

  • 31 Jan 2017