THE mother and sister of a Corsham teenager suffering from a rare genetic disorder are travelling to the Houses of Parliament today to lobby MPs for better support.
Nicholas Jones, 13, of Broadmeads, Corsham, has tuberous sclerosis which has left him with learning difficulties, uncontrollable epilepsy, kidney problems, unusual patches on his skin, and facial rashes.
Nicholas, who goes to St Nicholas special school in Chippenham, cannot go out to play with other children and often has eight epileptic fits a day, during which he can be a danger to family members.
His mother Sue, 47, and sister, Katie, 18, will join 120 other people from the TS Association for the day in London.
They will meet North Wiltshire MP James Gray in a bid to persuade the NHS to provide support to families with this kind of sclerosis.
"We would like to raise the question of why a DNA test is not available to see whether someone has genes which could lead them to have tuberous sclerosis," said Mrs Jones.
"We want a DNA test on the NHS to see if siblings of an affected child carry the gene and therefore have the possibility of having a child themselves with TS."
Mrs Jones said the Tuberous Sclerosis Association had raised more than £5 million for research but it cannot afford to pay for the blood tests needed to see whether a person carries the genes and it wants the NHS to pay for it.
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