When Katie was just 3 & a half weeks old we were told she had a genetic life shortening condition called cystic fibrosis (or CF for short).
CF is a disease that causes the body to make thick, sticky mucus that causes problems in two major areas, the lungs and the digestive system.
Healthy lungs produce mucus, which protects the airways and makes it easier to breathe but for a person with CF, the mucus is thick and sticky and can clog up the lungs. This creates a place where bacteria can easily grow and cause infections. Every infection can cause damage and scarring to the lungs which is irreparable and often leads to the person needing a lung transplant as they get older.
It's not only the airways and lungs that are affected in a person who has cystic fibrosis. Mucus-producing cells line the digestive tract including the stomach, intestines, liver, pancreas, and reproductive organs. The pancreas produces enzymes that help digest food and hormones that help absorb sugar. When thick mucus in the pancreas clogs up the narrow passageways it can make it difficult for people to digest food and get all the vitamins and nutrients they need so in order to help with this most people with CF need to take creon capsules.
Katie will normally take upto 25 of those capsules a day, depending on what she eats. She also has to take antibiotics & vitamins daily, As well as 3 nebulised treatments & physiotherapy twice a day. These may be more frequent if Katie is unwell.
Every 4 to 6 weeks we see her medical team for checkups including doctors, nurses, nutritionists, physical therapists etc...
Even with these checkups and all the treatments at home Katie's lung function has been decreasing over the last two years and we have now had to start going in for 2 week hospital stays every 3 months.
This can be very difficult for us as a family as she also has a younger brother with CF but we will do anything to try and keep her lungs as healthy as we can for as long as possible.