Growing up with cystic fibrosis (CF) can be a difficult and challenging experience. CF is a genetic disease that affects the lungs and digestive system, and it requires daily treatments and medication to manage symptoms and prevent complications. These treatments can include things like chest physical therapy, nebulised medications, and oral antibiotics.

As a child with CF, I had to follow a strict regimen of medications and therapies at home, which could be difficult to manage at times. Despite these challenges, I was determined to live a normal life and participate in activities that I enjoyed. CF was my normal, and I didn't know any better. One of the most difficult aspects of living with CF is the uncertainty of the future. The disease can progress differently in each person, and it's difficult to predict how severe symptoms will become. Additionally, many people with CF struggle with lung infections and other complications that can greatly impact their quality of life. My parents were told that I would not live past the age of 10 when I was diagnosed at 3 months old, yet here I am, more healthy than ever due to the advancements in treatments and medications.

In recent years, there have been several breakthroughs in CF treatments, known as "miracle drugs" which has transformed the lives of many patients in countries where they are available. These drugs target the underlying genetic mutations that cause CF and have been shown to significantly improve lung function and reduce the frequency of lung infections. However, access to these drugs is still limited in many countries, and many people with CF are unable to afford the high cost of treatment. Trikafta, the newest medication which is said to add 40 years to the CF life expectancy number, currently costs around R6 million ($311 000) for a year's supply.

The fact that these miracle drugs are not accessible to most countries is a great injustice, and it highlights the importance of working to improve access to treatments for people with CF and other rare diseases. BBT aims to create a place where you can connect with others who understand what you're going through, find resources and information about CF, and stay updated on the latest research and advancements in treatment..

But BBT is not only about education and connection, it's also about action. We have a donation page that enables anyone to donate and support our mission to help me and my family with the demanding financial nature of cystic fibrosis to gain access to life-saving drugs like Trikafta.