A MOTHER from Hartley Wintney joined MPs and other parents at Parliament to hear a debate over introducing a new drug to all cystic fibrosis (CF) suffers.

Catherine Sheahan, has been one of the 114,000 to sign a petition to get the drug Orkambi made available for free in the UK.

Both of 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.

During the debate which took place on Monday, 19 March MPs discussed the issue with the MP for Sutton and Cheam, Paul Scully outlining the need for the drug.

Mr Scully said: “I keep talking about urgency because for people with cystic fibrosis, their lung capacity can drop quite quickly in a matter of months.

“For people with it, it can be a matter of life or death or being able to get a lung transplant or not.

“The sense of urgency for this limited but important number of people is that if we give them the treatment they can live long full lives.”

After the debate, parents held a poignant candlelit vigil at Parliament Square to remember children who have died from cystic fibrosis and their own young ones who have the debilitating condition.

Members from across all the main political parties called on the government to ensure discussions between the drug’s manufacturer, Vertex, NHS England and the National Institute for Health and Care Excellence (NICE) progress swiftly and are concluded before more lives are lost.

Mrs Sheahan, who was in attendance at the vigil said: “Living as a parent of twins with cystic fibrosis is a constant struggle and a constant worry.

We wanted to show our solidarity for others who have lost family members to cystic fibrosis by holding a candlelight vigil in Parliament Square. We hope this will help push the NHS to make the right decision.”