Katie’s friends have hill to climb for gene trial hope

IT is a touching gesture by a group of teenagers desperate to give their friend a chance at life.

More than 50 youngsters will take to Holyrood Park for a five-kilometre run on Sunday to raise money for a drug trial which could dramatically change the future for 15-year-old Katie Jefferson.

The St Thomas of Aquin’s pupil was thrilled to learn she was one of 200 cystic fibrosis patients chosen to take part in a gene therapy trial. However, when her friends heard it was at risk of being scrapped because of a £6 million shortfall, they decided to help find some much-needed cash.

Katie’s mum, Gaynor, said: “Katie was picked to take part in the trials which were supposed to start in July. A couple of her friends decided they wanted to do something to help – for 15-year-olds to do this is fantastic.

“It’s really nice for them to take the initiative. Katie was overwhelmed.”

The Cystic Fibrosis Trust has until the end of the month to secure the donations required to allow the gene therapy trial to begin next spring.

Its UK Cystic Fibrosis Gene Therapy Consortium has been working for ten years to find a way of inserting a healthy gene into a patient’s lungs to ensure the damaging effects of the faulty gene are halted.

A clinical trial, which aims to determine whether this treatment works, is about to begin.

Mrs Jefferson, 45, from Howdenhall Drive, said: “What they said to us about the trials is that the drugs won’t be a cure, but will stop the illness progressing and slow it down.

“Katie has kept relatively well and lives a reasonably normal life. She is mainly affected in her chest and lungs.”

The teenager will join her friends on the charity run around Arthur’s Seat, which takes the 80s musical Fame as its theme.

Katie said: “It was quite a shock when we got told about funding for the gene trial. But it’s really nice that people are taking part in the run, even people I don’t know are helping.”

Her best friend, and one of the event organisers, Mairead Mangan, 15, added: “We wanted to do this because Katie has been waiting on the trials for a while, and we just wanted to help by raising as much money as we can. There has been lots of interest in it.”

The teenagers’ desperation to raise as much as possible is fuelled by the announcement that if the nationwide fundraising appeal – launched by the trust earlier this year – is not successful, the gene therapy trial will be shelved.

June Ross, the trust’s Scottish fundraising manager, said: “We are grateful for their commitment to fundraising to help this ground-breaking gene therapy trial go ahead.” • To donate to the appeal, visit www.cftrust.org.uk.