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Sister's crusade goes all way to Number 10
From the Swindon Advertiser, first published Friday 3rd Aug 2001.
CORSHAM teenager Katie Bevan-Jones loves her little brother Nicholas so much that she has enlisted the help of Cherie Blair to raise awareness of the rare disease he suffers from.
Nicholas, 14, suffers from the potentially life-threatening tuberous sclerosis (TS), which affects one in 6,000 children.
As well as having learning difficulties, a facial rash and a lesion on his heart, Nicholas also suffers up to 16 epileptic fits every day and doctors recently found cysts on both his kidneys.
His 19 year-old sister, who has just finished the first year of a law degree at Bristol University, wrote to Mrs Blair to explain the challenges faced by her family, and was delighted to hear back that she wanted to host a reception for families affected by the disease.
"My daughter just won't stop," said her mother Sue Jones. "She heard on the grapevine that Cherie hosted receptions for charities but they were few and far between.
"We were delighted to receive the response from Downing Street and it said she received thousands of requests but ours struck a chord."
Katie is no stranger to campaigning for her brother and the TS Association.
In October 1999 she was instrumental in launching Sib Sect, a contact group for the brothers and sisters of children with TS, with the help of Sophie, Countess of Wessex.
She appeared on national television and gave radio and newspaper interviews to help raise awareness of her brother's disease.
A year later she and her mother Sue Jones, of Broadmead, campaigned outside the House of Commons for a free DNA test on the NHS to screen relatives for the disease.
The reception, which will take place at Number 10 on November 27, couldn't come at a better time because this year will be the TS Association's 25th birthday.
While Mrs Jones said pioneering medical research into TS, which is caused by a chromosome abnormality, had come on in leaps and bounds over recent years, the disease was still largely unheard of by the general public.
"We have to remember that a child is born every week with TS," she said.
"If this reception raises the awareness of it so much that next time I'm shaking my tin outside a supermarket people have actually heard of the disease, we will have achieved what we wanted."
She said Katie and Nicholas had a very close bond and Katie often came home from university to see him.
"When she comes home I might be busy doing something and I'll find she's sneaked into Nicholas' room and they're playing on the Gameboy together or something. They are really close.
"I am very, very proud of Kate.
"She strives for perfection in everything she does and that's not something that comes from me or her father.
"She does it for Nick. She has always said she knows he won't be able to do A levels or go to university so she feels she's got to achieve for the both of them.
"When she got three As in her A levels she said to me `Mum, I did it for Nick'".
Doctors still cannot give the family any long-term prognosis for the Nicholas' future.
"Nicholas could live until he is 70 or he could have a seizure tonight that would kill him," said Mrs Jones.
"But we don't dwell on it and Nicholas is such a happy boy. When he was born we were told he would just sit in a chair and not be able to do anything.
"And against all that we have got a little boy who walks, talks, dresses and feeds himself.
"He is so brave considering all the problems he's had.
"Everyone comments that he always looks happy and he always has a smile."
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