We are very fortunate that Genevieve and Penelope’s CF test results indicate they have a mild form of CF. Their pancreases are sufficient and their sweat tests came back negative. These results mean that they don’t require daily enzyme tablets or salt added to their diet like most people with CF.
We had a rough few months when the girls were around 5-7 months, during their 1st winter. They were catching frequent colds. As parents it was terrifying, not only because of covid but because of how dangerous the average cold or flu can be for a CF sufferer. We were having to change their antibiotics around to help keep their chesty coughs under control.
Every cold or flu has the potential to send a CF sufferer to hospital. The thick mucus produced in their bodies makes it difficult for them to clear their lungs and harmful bacteria gets trapped. Every chest infection causes irreversible lung damage and scaring. This is why lung failure is the main cause of death for someone with CF.
It was around 6 months of age that doing the girls daily physio, to help clear their chests, became difficult as they were getting wriggly and would get bored very quickly. Along with their ongoing colds and viruses Genny and Penny also had an epic and torturous twelve days of gastro. How could two little humans produce so much diarrhoea and vomit?! We managed to keep the little champ’s home during this time. The doctor thought that due to their compromised immune systems, it took longer for them to fight off their first gastro bug.
Once the cold and flu season was over and the warmer weather was here our specialist wanted to try the girls off of their prophylactic antibiotics (which they’d been on since 3 weeks of age). We were eager to try but it only lasted a couple of months before they started getting respiratory issues again.
We still don’t know what the future holds for Genevieve and Penelope due to their rare gene combination but we are all learning together along the way.