How an Aberdeen family is changing the odds of cystic fibrosis in daughter's memory

Press and Journal

11-05-2025

Chloe Baxter was fiercely independent and loved nothing more than a good joke and loud music.
She had pink streaks in her hair, piercings in her lip and tongue and a talent for making people laugh — especially her dad, Tom.
'She had a wicked sense of humour,' says Tom, a former chemical engineer who lives in Aberdeen. 'And she was a big music fan. Everything from garage and grunge, Red Hot Chili Peppers and all that.'
Chloe died in 2006, aged just 23 and weeks after landing a new job she was thrilled about.
Battling cystic fibrosis since she was an infant, a chest infection took hold and, despite hospital treatment, she never recovered.
'At first we didn't expect the worst,' Tom says. 'But then I had that feeling — this was it.'
Diagnosed at 18 months old, Chloe faced long odds from the start.
'She had a 75% chance of reaching 16,' Tom remembers. 'She didn't know there was anything wrong with her at first. Later, she understood it was serious — but she just got on with it.'
Chloe studied English Literature at the University of Aberdeen and, despite repeated hospital stays, graduated with an upper second.
She worked as a care worker for disadvantaged adults, often taking night shifts where she was the only one on duty.
'She was determined,' Tom says. 'She wanted her independence, she left home at 18 and shared a flat with a friend.'
'We had a normal family life,' Tom adds. 'We'd get the CF out the way and carry on. When she wasn't infected, we'd go to France on holiday and have a good time.'
Chloe had just secured a new job preparing proposals at an engineering company — the same one where her mum, Grace, worked — when she became ill.
'She always wanted to do English at university,' Tom says. 'She had a really inspirational teacher who encouraged her.'
Like many with CF, Chloe faced complications. At 16, she developed diabetes.
'She was painfully thin,' Tom recalls. 'But once we got the diabetes under control, she put on some weight and had a lot more energy.'
There were joyful times too. 'We watched a lot of comedy — Bottom, The Young Ones, Monty Python — and laughed a lot.'
Ten years after Chloe's death, Tom and Grace set up a research fund in her memory at the University of Aberdeen.
'We had enough money to fund something for three years,' Tom explains. 'We chose to support research into how fungal infections interact with bacterial ones in CF.'
The project, called Chloe's Fund, struck a chord because Chloe had struggled with infections that wouldn't clear. The research is now on its third PhD student and has led to several academic papers.
'Each time, there have been significant findings,' Tom says. 'It gives us a lot of pleasure.'
The fund was created with the help of Chloe's CF consultant and Kairen Griffiths, a CF nurse at ARI whom Chloe was very close to. Kairen has even written a book on CF titled 65 Roses — the term young children often use when trying to say 'cystic fibrosis' — that includes Chloe.
'There's a chapter in the book based on Chloe,' Tom says. 'They don't use her name, but it's her story.'
Since Chloe passed away, there has been enormous progress in CF treatment. Drugs like Kaftrio, which target the root genetic cause of the disease, have dramatically increased life expectancy.
Tom says Chloe probably would have benefitted from the new genetic drugs, but he and Grace tend not to think about the what-ifs and maybes.
'It would torture you,' he says.
Meanwhile, they are delighted for the families that do benefit from it. 'There's no bitterness,' he says. 'We think it is fantastic.'
Kaftrio won't help everyone with CF — it depends on their genetic strain — but for those who can take it, the impact is dramatic.
'We used to be told CF couldn't be cured — that we could only treat the symptoms,' Tom says. 'Now, they've developed treatments that address the underlying cause.'
The odds in a CF patient's favour have improved significantly; instead of a 75% chance of making it to 16, it's now a 75% chance of reaching 60.
'That's phenomenal,' Tom says.
Chloe's presence is still very much felt in the Baxter family. Her younger sister, Gemma, now 38, has two young children. One has Chloe as a middle name.
They still talk about her, and she still surprises them.
When a film crew from the Cystic Fibrosis Trust came to hear their story recently, 'Gemma said a few things about her sister we'd never heard before,' Tom says.
Meanwhile, Tom and Grace still find comfort in remembering the good times. 'We can often talk about the laughs we had,' Tom says. 'It's made me a better person. You re-evaluate what's important.'
What would Chloe make of the fund and the work being done in her name?
'She'd love it. She'd be the poster girl.'
And for families living with CF today?
'Enjoy the new freedom you've got,' Tom says. 'And be forever thankful to medical science.'
Tom and Grace are working with the Cystic Fibrosis Trust to help raise money and awareness for Chloe's Fund at Aberdeen University.
To help Cystic Fibrosis Trust fund more important work, click here.