What is Cystic Fibrosis?

When Gwena was about 2 weeks old we finally got the phone call with her genetic results - she did have CF. We went to her first CF clinic visit that week and started her on her medicines and treatments. At that visit, she was almost 3 weeks old and had lost 5 oz, she was down to 4 lbs 8 oz. After getting on her enzymes, she gained 2 oz a day for about the first week.

But I'm getting ahead of myself. First off, for those who don't know... what is cystic fibrosis?

CF is a genetic disease that causes the body to produce a thick, sticky mucus that causes problems in various parts of the body, most notably in the lungs and digestive system. The mucus builds up in the lungs and leads to life-threatening infections, and it obstructs the pancreas, stopping the enzymes that are needed to digest food. CF is a relatively rare disease, with 30,000 people with CF in the US and about 70,000 worldwide. As recently as the 1950s, children with CF were unlikely to live long enough to attend elementary school. Now, the median life expectancy for those living with CF is 37 years, and for those born today it is likely to be even higher.

Gwena has cystic fibrosis, and there is no cure! There are, however, many amazing drugs and treatments in use now or in development that will help her fight this disease and extend her life. She takes enzymes every time she eats, to allow her to break down and digest her food. She has breathing treatments twice a day to thin and loosen the mucus in her lungs. Without these treatments, I know she might not even be here today. I will always be so grateful for these medicines, and thankful to God for the extra time Gwena has been granted. I pray that a cure will be found for Gwena and for all those with CF, and that my girl will live a long and healthy life!