The father of a Trowbridge girl affected by Retts Syndrome is battling to raise public awareness of the condition.
Les Barnes, the father of five-year-old Leanne, one of more than 900 children and women living with the condition in Britain, pointed to the need for public awareness of the neurological condition which attacks the nervous system.
He spoke out in advance of the Rett Syndrome Association's national Awareness Fortnight which began on Saturday, October 7.
"We have had to provide everyone with information even the doctors hadn't heard of it," he said.
The symptoms of the disease, which affects one in 10,000 babies, set in up to a year after birth, causing a child to lose speech, use of its hands, to become epileptic, or develop a curved spine.
"The child goes through a grieving process because they understand something is wrong but don't know what," said charity director Anna Salamonowicz.
Mr Barnes made contact with The Rett Syndrome Association (UK). It was then he discovered making contact was the start of a battle for Leanne.
"It has been very tough first she was diagnosed and then the battles start for everyone with a disabled child."
One aim of the awareness fortnight event is to create a focal point for affected families in Britain. The association held a family weekend on Saturday at the Northampton Hilton.
The event will mark a breakthrough in genetic research which has pinpointed a gene mutation on part of the X chromosome called the MECP2 . This hybrid affects protein regulation to other genes while a baby is developing, and is thought to be the cause of the syndrome.
The find has brought hope to Mr Barnes, as the potential for a cure and early detection through testing exists.
"Our greatest hope now is that this breakthrough will help doctors to prevent Rett syndrome happening in the first place," he said.
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