You may know, Azer has Cystic Fibrosis. This is a genetic disease. It affects how the body makes mucus. The mucus in Azer’s body is very thick, and causes chronic and frequent lung infections. It also causes him to have a hard time digesting fat and protein. He eats high calorie foods to try to compensate for this, but he is unable to eat enough to gain weight, hence the need for the feeding tube. He receives more than 1,200 calories through it a day.
Azer takes about 20 medications a day, and does about 2 hours of breathing treatments a day to keep his lungs clear. We also exercise and jog. Exercise is one of the best ways to keep his lungs healthy, we’ve found.
The life expectancy used to be only in the teens. But now, the average life expectancy is 37 years. The Cystic Fibrosis Foundation works hard creating new medications, and they are working to find a potential cure, too.
We are a team this year, called The Salty Southpaws. If you could donate a dollar or two, we would love it! The funds go directly to the CF Foundation, which goes to research for Cystic Fibrosis.
Azer was born on October the 6th, 2003. He was so perfect. Those tiny feet and hands. He was born with a lot of hair too. He was born in Colorado. In Colorado, included in the newborn screening for diseases, they did the mandatory test for Cystic Fibrosis. We had no idea what Cystic Fibrosis was at the time.
Soon after Azer was born, he started to loose weight. In only a week he had lost a pound or more. He also had a cough. The pediatrician didn't know why. When the results finally came back from the newborn screening, they said he might have CF. So they sent us off to another place to get a sweat chloride test. It turned out to be positive.
Even though we felt devastated, we soon came to learn that the diagnosis of CF is no longer a death sentence thanks to the new therapies and medications available today. The Cystic Fibrosis Foundation is working hard at finding a cure, and also is developing new drugs to help keep improving the quality of life for people like Azer.