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Former Marlow resident raising awareness about Rett Syndrome

Georgina Bishop

Georgina Bishop

Former Marlow resident raising awareness about Rett Syndrome

A past pupil of Furze Platt and Sir Borlase's Grammar School is trying to raise $20,000 and awareness for a neurological condition his two-year-old daughter suffers from.

Leigh Calvert now lives in America with his wife, Lacey and daughters Sadie, five, and Daphne, who has Rett Syndrome.

The condition affects one in 10,000 and occurs almost exclusively in girls, striking previously healthy girls between their first and second birthday.

It leaves sufferers with multiple disabilities and medical complexities for life.

Leigh aimed to raise 50 per cent of his $20k target by his birthday tomorrow (Wednesday) and on the eve of his birthday  he is just one per cent away.

Leigh’s sister, and aunt to Daphne, Gemma Calvert said: “Daphne is the happiest little girl.

“She couldn’t be more loved and cared for by her parents, big sister Sadie, close and wider family and friends but the future is filled with scary unknowns.

Gemma explained: “Most little girls with Rett are unable to speak, walk or use their hands.

“Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopaedic issues are also common.” 

Daphne is non verbal, immobile and has no use of her hands.

Although there is currently no treatment for Rett Syndrome scientists have identified the genetic mutation that causes it.

Hopeful of a cure in the future, Leigh and Lacey marked Daphne’s second birthday by launching an appeal to raise Rett Syndrome awareness and funds to help find a cure.

To find out more about Daphne or to donate go to www.rettgive.org/projects/a-cure-for-daphne 

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