‘Danielle and I were the best of friends as well as sisters’
CF sufferer’s half-marathon in memory of her lost sibling
A CYSTIC fibrosis patient whose health has been transformed by a breakthrough pill is set to run a half-marathon in memory of her sister who died from the disease.
Sophie and Danielle Jones were born with CF which can shorten lives by filling lungs with mucus.
In 2017 Sophie, 16, and Danielle, 19, were gifted dream days by charity Rays of Sunshine: Sophie had a pamper session and Danielle met Geordie Shore stars.
Danielle died that year aged 20 but Sophie was later put on wonder drug Kaftrio when it became available on the NHS following a campaign by the Daily Express.
Sophie, now 23, of Telford, Shropshire, is fundraising for Rays of Sunshine in the Great Birmingham Run on May 5.
She said: “I go and visit Danielle’s grave about once a month now and tell her all the news. She was the first person I told about doing the half-marathon; the first person I told about my new job in customer services.
“Danielle and I literally couldn’t have been closer – the best of friends as well as sisters. We knew how the other felt, how exhausted and down we were.
“Before Kaftrio I’d spent a week or two in hospital multiple times a year – now I haven’t been since November when I was chesty. It’s still tough – there are days when I struggle to breathe. But going on Facebook to talk to other people with CF who are taking Kaftrio, it’s incredible to hear their stories, to support each other.
“Whenever life feels tough, I remind myself what Danielle would say to me, how she’d have given anything to be where I am. Every step of the Birmingham Half she’ll be by my side.”
Danielle and Sophie’s parents did not know they had the faulty gene behind CF. When the girls were born no drugs existed to alleviate the symptoms: treatment was antibiotics and physiotherapy.
Sophie said: “We would both put on brave faces as much as we could... every day meant a load of meds, physio and nebulisers to clear our airways. Every few weeks we’d be in hospital for at least a week needing IV antibiotics and more. Every year it got worse – a reminder that this really was a degenerative disease.”
Normally CF patients cannot be in a room with anyone else with the condition as mixing different bugs can prove hazardous. But, as the sisters lived together and shared infections, they could support and hug each other.
Sophie added: “When Danielle was around 16, she moved to the Royal Stoke Hospital.We also got approached by Rays of Sunshine.
They probably didn’t fully get was how sick Danielle was then.”
Danielle spent most of the next year in hospital where Sophie cuddled her on her bed. Seeing her life drain away was horrific; Danielle died in November 2017.
Sophie went on: “To see Danielle not in pain any more was a blessing – but we all knew we’d be left with a hole in our hearts.
“While I wasn’t deemed poorly enough to be on the transplant list like my sister, I was regularly bedridden... constantly coughing.
“Socialising in any way was becoming almost impossible, and I regularly had to take weeks off work. Without Danielle with me, I felt I had nobody to talk to.”
In 2020 the Express revealed the NHS had struck a deal with US drug firm Vertex for Kaftrio – hailed as “like a cure” for CF.
Sophie said of the change in her life after taking it: “Within weeks I felt so much better, with clear lungs and loads of energy. I could take long walks without needing to stop. What should have been euphoric felt tinged with guilt, – that I was benefitting from this amazing new drug when Danielle never got the chance.
“Reports indicated that with Kaftrio, there was no reason you couldn’t live to 60 or 70 – twice what was on the cards for me before. I sat next to Danielle’s grave one day and told her the news. She’d tell me: ‘Just get out there, run, live your life for me’... It’s what I intend always to do.”
● Fundraising details at https://ajbellgreatbirminghamrun2024.enthuse.com/pf/sophie-jones