Cystic Fibrosis Week: Stacey’s story
As part of Cystic Fibrosis Week (8th-14th June 2026), we want to introduce you to Stacey who was diagnosed with cystic fibrosis at just ten months old.
Cystic fibrosis (CF) is one of the UK's most common life-threatening inherited diseases. It is caused by a defective gene and as a result, the internal organs, especially the lungs and digestive system become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food. It often requires life-long specialist hospital care and treatment which Stacey, from Winsford, has experienced first-hand.
When Stacey was born, motherly instincts convinced her mum that something wasn’t right. Her newborn hadn’t had a solid nappy yet and her concerns eventually led to Stacey’s diagnosis with cystic fibrosis. Heartbreakingly she was told that the outlook for Stacey was bleak, and it was unlikely she would live past her teenage years.
However, Stacey is now 43 years old and shared: “Mum always brought us up to be positive. If there are hurdles in the way then go round them, if not over them. Therefore, I’ve always normalised having cystic fibrosis. My mum taught me how to be strong as she feared for my future, so being strong was the only way she knew how to protect me. My mum is the reason I am who I am today, I shall forever be grateful to her for that."
Advances in the care and treatment of cystic fibrosis, including availability of the new ‘miracle’ drug Kaftrio has meant the outlook for some people with cystic fibrosis is far brighter now.
Stacey said: “I had my first chest infection when I was 13. I’d mainly had stomach problems up to that point. It hit me like a ton of bricks having to have my first IV to deliver antibiotics.
“When I was 17, I was transferred to Liverpool Heart and Chest Hospital. I had a healthy pregnancy with my first son and went over to Liverpool Women’s Hospital when I was 18 for his safe arrival.
“Soon after, I got married to my husband John and we had our second child. My pregnancy was much harder than the first and I struggled with back pain and chest infections. After the birth, I was back at LHCH to see the team and physiotherapists who helped me.
“In 2019, my health declined, the infections were harder to treat, and I was suffering with my breathing so much that I was on oxygen permanently. I was treated palliatively to relieve the pain and manage the symptoms. I couldn’t do anything.
“I was then faced with Guillain-Barre Syndrome which meant I was paralysed from the chest downwards, and I also lost a lot of control in my hands. I spent over six months in hospital at LHCH at this time. My husband never left my side.
“It was then that I was offered Kaftrio on compassionate grounds - a long-term treatment for people with cystic fibrosis. I thought I had nothing to lose and gave it a try.
“I slowly started to pick up. I came off oxygen. I was able to learn to walk again and master basic things we all take for granted, like holding a glass so I could have a drink.
“When I went home initially, I was tube fed overnight, it was my husband that did all of those feeds alongside all of the other treatment I still have to have. It was a really hard time for us all but particularly for my family who cared for me during the darkest of times. Gradually I started to feel I could live again, and my symptoms became more manageable. So much so that we were able to go to Disneyland as a family last year, which was magical.”
Stacey is pictured above with some of the Cherry Ward team celebrating her 43rd birthday last year
Stacey says she still spends a lot of time in hospital at LHCH.
“It’s always been a home from home experience. The team in Cherry Ward, the dedicated cystic fibrosis ward, are literally like our family.
“My two children have almost been brought up around the amazing nurses who dedicate themselves to patients and families like us. They make everyone feel comfortable, no matter what they’re going through.
“My boys are adults themselves now and still have a great relationship with the staff they have grown up with and treat them like family. We almost see NHS staff more than our blood family, but the bond is for life, no matter how long that is.
“I can’t ever put into words how much we appreciate the care given at LHCH and on Cherry Ward. Every single member of staff always goes above and beyond. They’re all amazing and I owe my life to them.
“I’ve spent many special occasions as an inpatient, and it isn’t just my family who celebrate with me, it’s my extended family of staff that always make sure they bring a smile to my face.
“I’ve even woken up on the ward and my room has been decorated by them. Lately I have spent more time on Cherry Ward than I have at home, but it’s just like visiting my other family for a holiday again. They really do make you feel loved and cared for – they’re the best.”
Stacey is pictured with her family at Christmas time on Cherry Ward at Liverpool Heart and Chest Hospital
Notes
- This week is Cystic Fibrosis Week (8th-14th June 2026).
- Liverpool Heart and Chest Hospital provides specialist adult Cystic Fibrosis services for Merseyside, Cheshire, North Wales and further afield.
- Cherry Ward is a ten-bed facility at LHCH dedicated for the care and treatment of people with Cystic Fibrosis (CF).
- To find out more about our cystic fibrosis service please visit our website.