CORSHAM'S Katie Bevan-Jones is so keen to promote awareness of her little brother's potentially life-threatening illness that she took her case to Cherie Blair.

And last week 19-year-old Katie, her brother Nicholas and parents Sue and David, not only met Mrs Blair, but also the Prime Minister and baby Leo, on a special day at Downing Street which will stay in their memories forever.

Nicholas, 13, has a rare disease called Tuberous Sclerosis which affects only one in 6,000 people.

In his case it can cause up to 16 epileptic fits every a day, as well as giving him learning difficulties, a disfiguring facial rash, cysts on both kidneys and a small lesion on his heart.

Until recently the disease was almost unheard of, but recent awareness campaigns and fundraising by the TS Association have meant medical research has improved greatly.

Despite all this, the TSA had tried to secure a reception at Downing Street for more than a decade without success, until Katie wrote to Mrs Blair personally earlier this year.

Mrs Bevan-Jones, of Broadmead, said: "Kate sat down and wrote quite an emotive letter about what it was like to have a brother with TS and how the association had struggled so hard to get any form of awareness."

To Katie's surprise, a letter came back from Downing Street with an invitation for the family to visit.

And last Tuesday, the Bevan-Jones family were part of a group of 40 who met Cherie. Because Nicholas uses a wheelchair, they were even allowed to drive their car up Downing Street and park opposite Number 10.

"We got out of the car and they were just putting the ramp up for Nick's wheelchair when the Prime Minister drove up.

"He came and said hello to Nicholas and asked him: 'Are you coming into my house?'

"Then he asked him to go in with him, which I thought was very nice."

The family and others from the TSA met Mrs Blair in The Pillar Room, where she chatted and mingled with everyone.

"She came in quite unannounced and then baby Leo came toddling through. He was adorable.

"It was really nice because there were some young children there with TS and he went up to play with them. It was really nice to see," she said.

Mrs Blair asked specially to talk to Katie, who is studying law at Bristol University, and the two of them had a long chat about the legal world.

"She expressed a keen interest in the young people and made every effort to speak to them," said Mrs Jones.

"She told Kate she wanted to meet Nicholas, and she came over and crouched down by his wheelchair and said hello.

"He asked her if she was in Hearsay and she laughed like mad.

"She bent down and whispered to him: 'I'm not, but I wish I was.'"

Mrs Jones said she felt confident Mrs Blair was genuinely interested to find out about the disease and how families and carers coped with it.

"She seemed to be really touched.

"I am really proud that Katie arranged all this, and also of Nicholas, who behaved impeccably on the day.

"He didn't recognise Tony or Cherie and didn't know who they were, but he could sense he was going somewhere special and we all had a wonderful day," said Mrs Jones.