Zoe's story - Jeans for Genes

Zoe's story

Zoe is 15 and lives in Hertfordshire. She was born with cystic fibrosis (CF), a condition that causes sticky mucus to clog the lungs and digestive system, making it difficult to breathe and digest food. She takes 40–50 tablets a day and three nebulisers.

To look at Zoe you would think she was a normal teenage girl who loves hanging out with her friends and adores music, rounders and netball. But Zoe has one of the UK’s most common life-threatening inherited diseases.

Cystic fibrosis affects over 9,000 people in the UK, and both parents must be carriers for their child to inherit the disorder.

Zoe’s mum Lorraine knew there was something amiss when her newborn daughter was very different from her first child. She says: ‘She could not get enough food. She wasn’t thriving and her weight fell off the bottom of the health charts … I think the GPs thought I was a paranoid mother but I knew something wasn’t right.’

Zoe was eventually referred to a hospital paediatrician at four months old. The doctors did a sweat test for CF. The next day Lorraine was at a friend’s house when she got a call from the hospital telling her that Zoe did have CF. She and the friend looked up the condition in an old medical book and were horrified at what they read, including a life expectancy of 10 years.

Zoe was referred to the Whittington Hospital and then Great Ormond Street Children’s Hospital where doctors explained that she had a life-long and life-threatening condition and would need medication, nebulisers and physiotherapy to clear the mucus from her chest, as well as antibiotics and enzymes to help her digestion. ‘Once she started on the treatment and physiotherapy, almost overnight she was like a different child. We mixed a tablet in her baby rice and we had to do physiotherapy twice a day; putting her over my lap, bashing her back with cupped hands so that she could clear her chest. I was horrified to hear what I needed to do, but Zoe found it soothing and used to go to sleep.’

Lorraine was also relieved to discover the old medical book she had looked in was quite wrong. People with CF can live well into their 40s/50s, even pensionable age.

Zoe’s health has been good and she is above average weight and height. Her mum credits exercise with improving Zoe’s lung capacity and fitness. Lorraine says: ‘She’s a strong-willed girl, tough and opinionated, but she is lovely and has the most amazing attitude. Nothing fazes her at all.’