Fundraiser for charity inspired by brave Fleetwood girl Kyra

A little girl with a rare and potentially life-shortening illness is the inspiration behind a charity fundraising event in Fleetwood on Saturday.

Thursday, 28th November 2019, 5:11 pm
Updated Thursday, 28th November 2019, 5:12 pm
Kyra Perry (left) with parents Jake and Stacy and little brother Tylan
Kyra Perry (left) with parents Jake and Stacy and little brother Tylan

Kyra Perry, aged eight, has the condition Fanconi Anaemia, a genetic disease which mainly affects the bone

marrow.

It means that Kyra, like many with the condition, is much smaller than other children her age and may need a bone marrow transplant

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Kyra Perry has Fanconi Anaemia

in future.

And her parents, Jake and Stacy Perry, who also have a three year old son called Tylan, are faced with the worry that there is a greater risk of Kyra developing cancer than usual, with the average life expectancy of patients just 30 years old.

But the family has been given massive support by the charity Fanconi Hope , with advice and regular contact – and tomorrow they are staging an event which they hope will raise funds to help its work and also awareness and greater understanding of the condition.

The fundraiser takes place at the Mount Hotel pub, on The Esplanade, Fleetwood, from 1pm to 6pm.

It will feature live music from local performers Jake Baxter ,Finlay Byrne, Matthew Ratcliff, Henry Hocking and Joe Boe , as well as a tombola and a raffle with some very generous prizes.

Stacy, 27, of Oxford Road, Fleetwood, who works as a childcare practitioner, said: “We were devastated when it was confirmed that Kyra had Fanconi Anaemia, when she was two and half years old.

“She had to fight from the day she was born, she was a tiny little baby weighing only 3lbs with wires all over her and a mask on her face - not what you want to see with your first child, it was so scary.

“After that she was back and forth to the hospital with one thing or other and eventually we spoke to a hormone specialist, who suspected that Kyra had Fanconi Anaemia.

“We’d never even heard of it - but then we googled it.”

Kyra is still small for her age but is doing well and attends Charles Saer Primary School - but her condition will always need monitoring and there are still regular hospital visits.

Stacy added: "She still gets comments from people about being small, which knocks her confidence.Most people just don't understand about her condition and all the things she has to go through."

Anyone who wants to help the campaign can just turn up at The Mount on the day.