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 Duchess of Cambridge has praised the "amazing and life-changing" work of children's hospices in a touching and personal letter.
Cloudy, coastal drizzle later tonight. Breezy near the coast
Fine and dry with sunny spells. Breezy near the coast.