'The most caring person' - Family pay tribute to Edinburgh Cystic Fibrosis sufferer, 24, who died weeks after donor found for double lung transplant

A heartbroken Edinburgh family have paid tribute to a “caring” young Cystic Fibrosis (CF) sufferer who died just weeks after a donor was found for a double lung transplant.

Thursday, 1st October 2020, 4:45 pm

Katie Jefferson had been battling a severe chest infection before she died at the city’s Western General Hospital on Tuesday with her loving family and devoted nurses by her side.

The 24-year-old old, who was diagnosed with the life-limiting condition at two months old, became the face of a cystic fibrosis charity - The Butterfly Trust - and raised awareness of CF, which causes mucus to build up in the lungs and digestive system.

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Her brother, Sam Jefferson, told the Edinburgh Evening news that her illness worsened around the age of 19 and that walking up a flight of stairs became a struggle, often leaving her exhausted for hours - and she had typically needed about five hospital visits a year to treat infections.

Katie Jefferson. Pic: Contributed
Katie Jefferson. Pic: Contributed

In recent years, Katie had even written a number of letters detailing her own funeral plans which included being buried in her prom dress, songs to play and who should be sitting near the front of the chapel.

Sam, 22, said: “Everyone knew Katie somehow. She was the friendliest, nicest person and always wanted to check on everyone, no matter what she was going through, and was always willing to sit and listen for hours. She was the most caring person.

“She was in and out of that ward for about seven years and they are just the most phenomenal staff there.”

Quitting ‘never an option’

Sam and Katie at his graduation. Pic: Contributed

Katie, who was from Gracemount but had been living with her father Stewart Jefferson in the Borders during lockdown, was admitted to hospital in July.

Doctors took a CT scan and established she was suffering from a serious fungal lung infection and they administered various treatments - but the infection spread.

Sam said his sister always stayed positive and wanted to try other treatments and, just hours before she died on Tuesday, had been up and walking around and chatting to others in the ward including her mother, Gaynor.

Katie was told by a transplant team in Newcastle that a lung donor had been found in August after a two year wait, but Sam said: “They phoned her back about 20 minutes later because the antibiotics she was on at the time made her far too high risk.

Katie doing some work for the Butterfly Trust with best friend, Mairead, and in the prom dress she wished to be buried in. Pictures: contributed.

“But she wanted to go ahead. Stopping or quitting was never an option. It’s definitely a thought that, maybe if she was not ill at the time, it could have happened and it might have turned out differently.”

Sam stressed that, before Katie went into hospital, she was at high risk anyway and it was too difficult to say whether the transplant would have worked.

But other CF sufferers she knew who had a transplant told her it had given them a new lease of life.

Sam said his sister coped really well with CF until her late teens and that she enjoyed swimming and dancing as a child.

Sam and his big sister as children.

In her early 20s, Katie worked in The County Inn in Peebles as well as Stobo Castle and volunteered for a mental health charity.

Sam also plans to complete his sister’s bucket list which includes climbing munros, scuba diving and travelling.

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