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Stamford family to stage 'Glastonlenny' fundraiser for three-year-old born with rare FOP condition



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The family of a Stamford boy with a rare genetic condition have begun organising a big summer fundraising event.

Three-year-old Lenny Blaik was diagnosed with fibrodysplasia ossificans progressiva (FOP) a year ago, one of only 70 known people with FOP in the UK.

The condition causes human connective tissue, such as ligament, cartilage and tendons, to turn into bone, while broken bones can lead to permanent damage.

Lenny Blaik does some sightseeing in London before his visit to Great Ormond Street Hospital
Lenny Blaik does some sightseeing in London before his visit to Great Ormond Street Hospital

Lenny's parents Stacey Goodliffe and Mick Blaik are to hold Glastonlenny at the Danish Invader pub, in Empingham Road, on Saturday, August 27 in association with the FOP Friends charity.

They want to hear from businesses who would like to sponsor the event and are inviting donations of items for a prize raffle and tombola.

They would also like to hear from entertainers such as face painters, balloon modellers, bands and singers, and superhero mascots.

Lenny is one of just 900 known patients in the world with FOP
Lenny is one of just 900 known patients in the world with FOP

Lenny had to undergo an operation at Great Ormond Street Hospital, in London, last week to remove most of his teeth, but has secured a place at Willoughby School, in Bourne from September.

"Lenny has been okay," said mum Stacey.

"He has had a lot of flare-ups which has led to extra bone growth and has lost crawling mobility to one of his legs.

"He has also lost a lot of his hearing due to bone growth around his ears so he is having some hearing aids fitted."

A previous fundraising raffle, to buy equipment to help with Lenny's developing challenges, raised £4,000.

"The support from businesses and the general public was amazing," Stacey added.

Call Stacey on 07389 062848 or e-mail staceygoodliffe22@gmail.com if you would like to help.



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