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LITTLE LEXI: Hemel Hempstead baby with rare condition that ‘turns body to stone’ celebrates first birthday

 Published on: 18th February 2022   |   By: Lizzie Ellis   |   Category: Uncategorized

A baby from Hemel Hempstead who has a rare disease that only affects 14 children in the UK has celebrated her first birthday.

Lexi Robins celebrated turning one on January 31, as her parents Dave and Alex Robins continue to campaign for better treatment and more funds for the rare disease fibrodysplasia ossificans progressiva (FOP).

Since their daughters’ diagnosis a few months after birth, they have raised over £160,000 for charity, campaigned for better treatment and debated the condition in Parliament, in the hope of finding a cure for Lexi and everyone who suffers from FOP.

After a successful parliamentary debate at the end of 2021, the Robins family now hopes to secure a three-hour parliamentary debate in Spring and put a bid in for government funding for FOP.

You can keep up to date with Lexi’s journey by searching ‘Lexi Robins’ on Facebook.

To donate to Lexi’s fundraiser visit

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