Raising funds for Cystic Fibrosis Research

Two and a half years ago on July 26 at a little past three in the morning I was given the greatest blessing I could ever hope to receive. My first child was born. We named him Damien. He was small but still so precious.

Everyone knows children will change your life, but I had no idea just how much Damien would change me or my life. After I got out of the hospital and took him home, things started to go wrong. He always seemed hungry, but when I fed him, he couldn't keep anything down. He started losing weight, which is normal for newborns, I know, but he kept losing. Damien also had a hard time staying awake. He slept so much more then normal babies. It worried me that he slept like that. But because of his inability to retain nutrients, his body had no energy and so he slept. I was becoming scared. Not knowing what was wrong, I began to fear that I would lose my first child without him having the chance to really know what life is all about. I felt it was my fault. At the time, I thought there was something I was doing or something that I was missing so I took him to the doctor. His pediatrician took one look at him and had him admitted to the hospital. We were there for almost a week while nurses and doctors ran tests and observed his feeding habits. All I could do was pray for him.

At the end of the five days we were sent home, both of us exhausted. A few days later I recieved a call from his pediatrician. He told me he was scheduling Damien for a sweat test to confirm the findings of the newborn screening which had come back positive for Cystic Fibrosis. My heart stopped for that moment. I had no idea what Cystic Fibrosis was. So I began researching. I learned how CF causes the body to produce thick sticky mucus which makes breathing difficult. It also affects pancreatic and digestive functions. That was why Damien was throwing up everything he ate. He couldn't digest anything because of the mucus in his system. I learned that he needed enzymes to help him retain calories and nutrients from his food, but we couldn't get him on them until the findings were confirmed. So off we went to LSU for the test. The results came back positive and I got him into a clinic as soon as I could. I picked up on his treatments pretty quickly. Inhaler treatments twice a day, water soluble vitamins, Enzymes with every meal, antacids, and a nebulizer treatment. The change in him was almost immediate. While he still wasn't eating much, he began to keep more and more of his feedings down. Very slowly, he started to gain weight. He was a different child. His energy flourished and he stayed awake for longer periods of time. He has been in the hospital for CF related issues since then. Once to have a feeding tube put into his stomach and another so his CF team could monitor his weight and eating habits over several days. On the whole, though, we have been blessed with good health for Damien so far. He hasn't really had any other complications from his CF, but others aren't as lucky. Long hospital stays are a part of daily life even at young ages. Oxygen tanks, feeding tubes, and lung transplants keep them going. It is very likely Damien will experience heavier medical burdens then he deals with right now as he grows older. As with others like him, there is great probability that CF will claim his life one day. While medical advances are farther then they were even just ten years ago, they aren't far enough to keep the disease from winning out. It doesn't have to stay that way forever. With help and donations, medical research can continue their battle to stop this disease. Please, buy a tshirt and show support for those who just want to breathe. Give them a fighting chance against this horrible illness. Blessings be upon you and thank you.