If you met our engineer Danielle – a bright, slightly chaotic bundle of energy, who keeps her corner of the office in stitches all day – you wouldn’t know she’s lived her whole life with a chronic illness. The truth is she didn’t expect to survive to adulthood, let alone to 31. Having beat the odds, she’s now working to share her good fortune by raising funds for the Cystic Fibrosis Trust, the main UK charity dedicated to fighting this condition.
A difficult start
“I’ve never had a normal life because I was in and out of hospital all the time.”
When Danielle was 3 months old, she was diagnosed with a genetic condition called cystic fibrosis. The odds were heavily stacked against her – mucus would build up in and around her organs, filling up her lungs and damaging her digestive system. She would struggle to breathe and get persistent chest infections. Her body’s growing inability to absorb nutrients would put her at constant risk of malnourishment. The doctors told her mother she wouldn’t live to sixteen.
Whilst this was devastating news, for Danielle it was all she knew: “I’ve never had a normal life because I was in and out of hospital all the time. It was all needles and tablets, tablets and needles.”
Being used to it, however, didn’t make it easy. One of the most life-limiting aspects of cystic fibrosis is the social isolation it causes. Growing up, Danielle was often alone in the hospital, sometimes in full quarantine, with little human contact other than the nurses who looked after her.
“You do have your own chef, though,” she reminisced. “So if you want chips and curry for dinner every day, they’ll make it for you. That was ace.”
Another bright spot was the friends she made while in the hospital. Even if they couldn’t meet in person due to the risk of cross-infection, she built lasting friendships with people who understood what she was going through.
But whilst Danielle defied the odds, many of them didn’t.
A new lease on life
“I’m going to live now. I’m going to be on this planet a little bit longer than what I expected. I’m going to be an adult for a while!”
Until very recently, cystic fibrosis was treated by managing the effects of it, rather than the cause. This changed in 2019 when Kaftrio entered the market. This medication targets the production of mucus in the cells directly, preventing many of the symptoms from manifesting.
This was revolutionary to people who, like Danielle, responded well to the medication. Whilst it is far from a cure and can’t reverse pre-existing damage (she had by then developed diabetes) it changed countless lives for the better.
Danielle hasn’t needed a hospital stay in five years and stopped having to take a lot of the medications she had before: “I have my insulin, tablets to help me absorb nutrients better, and the Kaftrio. That’s it, really. No nebulisers, no antibiotics.”
She can now live a normal life, and live it for much longer life than she expected – something that completely changed her outlook.
“It was like… I’m going to live now. I’m going to be on this planet a little bit longer than what I expected. I’m an adult – I’m going to be an adult for a while! Do I want kids? It was very hard to get used to.”
She did get used to it, however. She’s now able to live a full life, which she shares with her partner, her dog and cat, and an unlikely number of vehicles. She’s recently started taking college classes in the evening, and finally finished fixing her baby: an Audi A5 she’s been working on for seven years. She looks after herself in a way she never did when she thought she wouldn’t live much longer.
It should come as no surprise that her experiences gave her a mentality of seizing the day and living life to its fullest.
“Just do it! Do the damn thing! You can’t live your life wondering what if.”
About the Cystic Fibrosis Trust
“The CFT helped me so much in the past, I’m just trying to give something back.”
Unfortunately, not every CF patient has a success story like Danielle’s. Many people her age passed away before Kaftrio was available, whilst others suffered irreversible damage to their bodies that will continue to limit their life. Many patients can’t benefit from this medication at all. The landscape of cystic fibrosis is complex, and this diversity of needs is what makes organisations like the Cystic Fibrosis Trust so important.
The CFT is a UK charity dedicated to fighting cystic fibrosis, not only by funding research and improving standards of care, but also by supporting patients directly. From information resources to financial aid and help with employment, it’s an invaluable asset to people faced with difficult and often confusing life-long challenges.
They were also an important part of the effort to make Kaftrio available in the NHS, changing the lives of people like Danielle.
A year of giving back
On an otherwise unremarkable Thursday last summer, the Zebraware office had a very strange experience: Danielle was totally silent. This would have been concerning if we hadn’t been warned, as her voice is a key feature of our usual ambient noise.
In the end, Danielle managed to raise over 300 pounds in aid of the Cystic Fibrosis Trust through her sponsored silence. That choice feels almost symbolic, but the motive behind it was a lot simpler than making us feel her absence:
“It was just the hardest thing I could think of doing – you know I can’t shut up!”
This was the first of four donation drives Danielle has planned for her year-long campaign in support of the CFT. In December, the office will hold a “Dress as Your Hobby Day”, followed by an outrageous t-shirt competition next year. The fundraiser will culminate with a climb of Mount Snowden by Zebraware’s less unathletic team members, Danielle included – talk about symbolic.
“The CFT helped me so much in the past,” Danielle concluded. “I’m just trying to give something back.”
If you’re interested in donating, please visit Danielle’s JustGiving page. Thank you!