A BURBAGE family has been chosen to lead a new campaign to boost awareness of genetic disorders and the stresses caused by having a child that hardly sleeps.

The Stevenson family is the new face of national campaign #DreamsforGenes and shared their experiences of living with a child with a genetic disorder. The campaign is linked to the popular Jeans for Genes day in which schools and workers wear jeans for charity which this year will be held on September 22. Lily, 10, has Smith-Magenis syndrome, a disorder that dramatically affects her sleeping patterns, often causing her to wake and become restless in the night.

Parents freelance web designer Leeann and IT consultant Will have spent the last 10 years battling for more sleep as they cope with Lily's illness.

Mrs Stevenson, 43, said: “Our dream would be that we should all be able to have a good night’s sleep so that we can all dream again.We have had our sleep affected for 10 years - the impact this has had on us as a family is immense.

“I worry about Lily - her long term health - how the sleep disturbance will affect her.

“We know how it affects us over the long term, I’ve definitely experienced increased stress, anxiety, chronic fatigue - I am always tired - and have experienced depression at times.”

The family of five moved to Burbage just before Lily was born ten years ago, and Lily now attends Marlborough St Mary’s primary school which has specialist resources for children with special educational needs. Mrs Stevenson said: “The children are amazing with Lily by being so accepting and supporting of her.”

Her two sons, William, six, and Teddy, three, attend St Katherine’s primary school in Savernake, Marlborough.Both primary schools have pledged to support the Jeans for Genes day in September.

Lily’s diagnosis came when she was three years old and was a surprise to her parents. Her mum said: “She’d had delayed speech and delayed walking but I wasn’t prepared for the diagnosis. From two years old the gap just kept widening.” Symptoms of SMS include mild to severe intellectual disability, delayed speech and behavioural problems including self-harm, heart and kidney problems and distinctive facial features. The Dreams for Genes campaign has released a series of short videos featuring families living with genetic disorders to boost awareness. The family will now front the charity’s national campaign ahead of Jeans for Genes day on September 22.To register for Jeans for Genes day on Friday September 22, go to jeansforgenesday.org.