Thirteen year-old Sophie was only the 12th person in the world to be diagnosed with CFC syndrome. There is currently only one other person in New Zealand suffering from it.
CFC syndrome causes a number of complications and Sophie has a hole in the heart, problems with her heart valves and both her facial features and skin are affected. Her life has been a series of visits to doctors and hospitals and there have been some tough times for Sophie and her family.
Sophie is in Year 9 and really enjoys her studies in a home school environment and takes part in many social activities with her friends after class.
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