Wilmslow mum's delight at success of cystic fibrosis petition

The petition called for Orkambi to be made available on the NHS for people with cystic fibrosis.

The petition has attracted 111,000 signatures, with Parliament considering all petitions which attract more than 100,000 for a debate.

Fiona lives in Wilmslow, and her two-and-a-half-year-old son Ted has cystic fibrosis.

“The Orkambi petition attracted amazing 100,000 names in only 10 days,” she said.

“I was so shocked, as I thought it would take three to four months – I was glued to the screen as it reached the target for a debate.

“Orkambi would make a huge difference to Ted’s quality of life, including improving his lung function.

“It would cost me £104,000 a year for the drug for the rest of Ted’s life if I had to pay for it.”

The petition stated: “Conventional CF treatments target the symptoms of CF, precision medicines like Orkambi tackle the cause of the condition.

“Though Orkambi is not a cure, it has been found to slow decline in lung function, the most common cause of death for people with CF, by 42 per cent.”

Fiona and fellow Wilmslow mum Dominique Paton, whose 17-year-son Max also has the condition, met Tatton MP Esther McVey at an event in November in Westminster hosted by the Cystic Fibrosis Trust.

Orkambi is licensed in the UK but not currently provided by the NHS.

Cystic fibrosis is a life-shortening, inherited disorder leading to severely reduced quality of life through a build-up of thick, sticky mucus that causes chronic lung infections and progressive lung damage.

Half of all people who died with CF last year were under the age of 31.

Ms McVey said in November: “I met with constituents Fiona Brown and Dominique Paton, who both have a child with CF, so they know how this impacts a family and rightly are campaigning for access to the precision medication which could prolong life and improve lung function.”

Fiona thanked Ms McVey for her support and everyone who has signed the petition.