THE MUM of a three-year-old girl from Yate with cystic fibrosis has described the success of a petition calling on the government to introduce a revolutionary new drug as “a dream”.

Annabelle Brennan was diagnosed with cystic fibrosis at two weeks old during a routine screening check, coming as a huge shock to her family as there was no previous history of the genetic condition and her two older brothers, Finley, eight, and five-year-old Oscar, were healthy.

Her parents, Liz and Shane Brennan, have been part of a national campaign to see their daughter have access to orkambi, a “wonder drug” which could change her life.

The problem is that the costly drug is not currently available to children her age on the NHS due to it not being considered “cost effective”, with the National Institute for Health and Care Excellence (NICE) saying there was too much uncertainty around its long term impact.

A deal between the drug’s manufacturer Vertex and the European Commission back in January has meant the minimum age of access to the drug has now gone from 12 to six years old, but despite ongoing discussions, this has yet to be implemented in the UK.

A petition for the government to discuss and potentially reassess the price and accessibility of orkambi to people with cystic fibrosis collected more than 107,000 signatures in only seven days, prompting a “round table” discussion on February 28 and a cross-party debate in Parliament on March 19.

Mum Liz said that having the debate was “a dream” and hoped that progress could be made soon, and, with the European deal in place, the next step would be to see the drug also funded for children under six.

The most common genetic condition in the UK, cystic fibrosis is where the gene that controls the transfer of water and salt in the cells is faulty, causing thick mucus to build up in a number of vital organs, leading to bacteria growth, chronic infections and the progressive decline of the lungs and health in general.

As a result, Annabelle must go through a rigorous daily routine of physio and medication just to stay healthy.

“Having access to orkambi means a more certain future,” said Liz, “one with less obstacles and less time in hospital, where she can concentrate on school and can have a more normal life like the rest of her friends.

“I want Annabelle’s condition to come second to her life and what she achieves.

“She is so smart, she has every chance to be anything she wants to be and can really add value to this world and as a mum I don’t want her condition to hold her back.”

Confirming he would be in attendance at the debate, Thornbury and Yate MP Luke Hall, who has fought alongside the Brennan family for the drug to be introduced to younger children, said he would be calling on the government to make sure “everything possible is being done”.

Lynsey Beswick, public affairs manager at Cystic Fibrosis Trust, said that if orkambi were more available, it could benefit around half of those with cystic fibrosis in the country, urging people to write to their MPs in support.