A CAMPAIGNING mother has spoke of her disappointment in her local MP in supporting a petition which could change her children’s lives.

Hartley Wintney resident Catherine Sheahan is among more than 100,000 people who have lobbied to get the Orkambi drug made available for everyone with cystic fibrosis (CF).

Mrs Sheahan’s 14-year-old twins Elizabeth and William suffer from cystic fibrosis and she said if this groundbreaking drug is made available it will make a real difference to their lives.

After the idea of introducing the ground-breaking drug was debated in parliament the 46-year-old has been urging her local MP, Ranil Jayawardena to show his support for the petition.

In a letter to the North East Hampshire Mrs Sheahan said: “Many MPs spoke about their constituents stories which moved them to come and be their voice. My children unfortunately did not have that representation, which I find deeply insulting and unsupportive.

“The pressure of having two children with a serious condition is immeasurable. The children were not diagnosed until they were three, as new born screening was not available in our area at the time.

“I ask you again to represent my children in committing to this very serious issue. My children have the right to a life unlimited and a future to look forward to. We do not want to bury our children, please see the debate and sign the cross-party letter.”

Mr Jayawardena was invited to attend a roundtable discussion and was aware of the Westminster Hall debate on this matter, but he had informed Mrs Sheahan that it was unlikely he’d be able to attend as he had prior Parliamentary commitments at those times.

The MP said: ““I have been in regular contact with Mrs Sheahan over the last two years and, in response to her many emails and letters, I have sent replies, including information that I elicited from Sir Andrew Dillon—the Chief Executive of the National Institute for Health and Care Excellence.

“I genuinely sympathise with her and her family, but it’s important for me to be honest. The Health Minister, Steve Brine MP, updated the House of Commons with the truth about the current situation, saying: ‘We have made a counter-offer to Vertex. I call on Vertex to be reasonable, and I call on Vertex and NHS England to get back round the table and get this sorted.’

“I will continue to discuss a wide range of health matters with Ministers and others, to represent my constituents’ interests.”