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LITTLE LEXI: Family to host event in Kings Langley to raise funds for daughter’s rare condition

 Published on: 27th September 2022   |   By: Christina Pantelly   |   Category: Uncategorized

A family whose daughter suffers from a disease that affects just 14 children in the UK is hosting a gala dinner fundraiser to generate much-needed funds for the charity.

18-month-old Lexi Robins suffers from Fibrodysplasia Ossificans Progressiva (FOP), which is caused by a single gene mutation and only affects around 70 people in the UK. 

With FOP, the body’s soft tissue progressively transforms into bone, restricting movement and ultimately immobilising the body in a fixed posture.

Lexi’s mum, Alex Robins, has tirelessly campaigned for funds for research and a cure for charity FOP Friends, and she is hosting yet another fundraiser to support them.

The gala dinner fundraiser event includes a three-course meal, live music, dancing, and an auction. It will take place on Saturday, October 15 from 6pm to 12am at Shendish Manor Hotel HP3 0AA.

Alex is just £12,000 away from raising a total of £200,000 for the charity and is hoping the event will raise as much money as possible. 

Prize donations for the raffle are still welcome, and if any person or business wishes to donate, please email

For more information about the event and to buy tickets, please visit

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

To donate to Lexi’s fundraiser, please visit

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