Please be my LIFESAVER!
My name is Brayden.
This is my life story:
Hi I am Brayden. I amseven. years ago. This is my story about living with Cystic Fibrosis. Cystic Fibrosis is a rare, progressive, life threatening disease, results in the formation of thick mucous that builds up in the lungs, digestive tract and other parts of the body. It leads to severe respiratory and digestive problems as well other complications such as infections and diabetes.
When I was born, seven years ago, my new born screening reflected a positive result for Cystic Fibrosis (CF). My parents knew I had the potential for being a carrier for CF, because my mom is a carrier. Unfortunately, Cystic Fibrosis is no stranger to my family. My mother has a cousin who was born with CF in 1975. He battled a severe case of CF until he lost this battle 2 months before his 21st birthday. I have a big sister that was born in 2012 and is very healthy and does not have CF. When I was born in 2016, it took 11 months of multiple sweat tests, blood tests, along with many visits to the Pulmonologist, Primary Care Physician and Geneticists before they come to the conclusion that my dad carried a rare gene of CF. The CF gene combination which I carry is very unique, as only .24% of the CF populations have this CF gene combination. Since my diagnosis six years ago, my parents have been trying hard to retain healthy lungs for as long as possible.
Together with the CF clinic at OU Children's Hospital in OKC, OK, we have a routine of twice a day chest physical therapy using a vest connected to a air compressor (helps break up mucous in my body), vitamin regimen, two nebulizer drugs and I also started Trikafta on March 25, 2022. This drug could help me live a longer life! Sometimes my daily "normal" routine can take up to an hour in the morning and at night.
My parents have to be very vigilant to keep my exposure to germs and illness at a minimal. However, this can be very difficult because my parents work full time to in order to pay insurance costs, uninsured medicines and doctor expenses, and to help save for my future. Our "normal" routine has been adjusted to help me live long past my average life expectancy of 42 years. However this is not a cure. Unfortunatley, 7-10% of the CF popluation do not have a medication regiment that works.
I enjoy playing flag football, basketball, soccer and baseball.
We need to continue the research to find a cure. Please help me raise awareness for cystic fibrosis Thanks for your support and prayers,
UNTIL IT'S DONE!