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Frankie has X factor with a twist
THE parents of a young boy with a rare chromosomal disorder are sponsoring a film screening to raise awareness of the condition.
Seven-year-old Frankie Devine has Fragile X Syndrome, described in an acclaimed film called Mission to Lars as ‘autism with bells on’.
Mission to Lars is a documentary about a young man called Tom Spicer, who lives with the syndrome. His brother and sister try to help him achieve his ambition to meet Metallica drummer Lars Ulrich.
On Sunday at 6.30pm there will be a screening at Cricklade Town Hall, supported by Cricklade Cinema! and Swindon Film Society, and sponsored by Frankie’s mum and dad, Liz and Sean.
Liz, 42, said: “Fragile X Syndrome is caused by a faulty X chromosome. It literally looks as if the tip is breaking off if you look at it under a microscope.
“It switches a gene off which normally produces FMRP, a protein which is essential for normal cognitive development.”
Liz and Sean, 46, work in the music industry, Liz sourcing music for commercials and Sean in licensing. They moved from London to Cricklade a decade ago.
Frankie’s Fragile X was diagnosed by a blood test when he was three and a half years old.
Symptoms vary from person to person, but Frankie’s include Autistic Spectrum Disorder, poor muscle tone,severe anxiety in social situations, attention deficit, impulsivity and a severe epileptic fit every three months or so.
In spite of these challenges, he’s a happy young man and a much loved member of Minety Primary, the mainstream school he attends.
“He rarely cries other than when he’s anxious,” said Liz. “He’s funny and he loves to hear people laugh. He also loves music. His favourite band is Madness and his favourite instrument is the sax.
“He has an amazing memory and can recite books from start to finish.”
Frankie also loves computers and gadgets, and began picking out music on the family piano after learning the basics from an app.
Another great love is Bitsy, the family dog, a rescue animal Liz describes as a faithful but vertically-challenged hound, who is currently being trained by Dogs for the Disabled.
Frankie and his mum and dad have been helped by a range of organisations, including a specialist pre-school service called Portage, the Koalas opportunity group, Swindon’s Child and Adolescent Mental Health Service and a Purton Stoke organisation called Music Alive.
Tickets for Sunday’s screening of Mission to Lars cost £5 and can be obtained from the town council offices or Animal Fayre in Cricklade’s High Street.
Proceeds will be donated to the Fragile X Society www.fragilex.org.uk