Little Madeline Reeder from Lowestoft has a medical condition so rare that only seven people in the world's population of seven billion, have it.
It's so rare it doesn't even have a name. ITV News Anglia's Natalie Gray went along to meet Madeline and her family. Click above to watch her report.
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The wintry weather is continuing across the Anglia region with sleet and snow in many areas. Here is a selection of pictures from viewers.
Cold with further wintry showers which may merge into longer periods of snow after midnight.
A man in his 70s has been badly burned in a flat fire in Norwich