My daughter, Aubrey, was diagnosed with Cystic Fibrosis(CF) through her newborn screening in the hospital. My husband and I had no idea what CF was, nor had we ever known anyone with CF. There is no family history, and we were completely unaware that we were both carriers of the gene that causes CF. The day that we recieved the phone call, just one week after she was born, is a day that I will never forget. It was almost like all of my joy of being a new parent was ripped away from me in a matter of minutes. How could it be possible that my beautiful, perfect baby girl has a life-shortening genetic disease? It took me some time to comprehend it all, but I knew that I would do anything I could to make sure Aubrey has an amazing, long, healthy life.
CF is a disease that Aubrey battles every single day, and she will have to continue to fight for the rest of her life. Although she may look healthy on the outside, it is a very different story on the inside. We work incredibly hard each and every day to keep her healthy. She has to do 1 hour of airway clearance treatments everyday, and she does this by wearing a vest that vibrates and shakes, to help break up the mucus in her lungs, and when she is sick it increases to 2 hours a day. While she is doing her airway clearance, we have to give her inhalers and she also has to inhale special medicine through a nebulizer. CF not only affects the lungs, it also affects the digestive system. So before Aubrey eats anything, she has to take enzymes, which help her to absorb the nutrients that her body needs. Aubrey has had a very difficult time gaining weight, so she now has a gastrostomy tube, so we can perform supplemental feedings overnight. She also has to take countless vitamins and reflux medications daily, and when she is sick, antibiotics are added to her daily regimen. Another part of CF is frequent hospitalizations, and Aubrey has been hospitalized a few times, mostly for respiratory illnesses due to CF exacerbations. Although there are many days where we dread treatments or having to give her medications, we are very thankful for all of it, because without it, Aubrey would not be able to battle this disease.
Anyone that knows Aubrey, knows that she is an amazing little girl. Despite all she has to go through, she is always happy and smiling. She has displayed incredible strength, and I know this will carry on through the years, and she will be able to overcome any obstacle put in her way. But there is still a long road ahead of her, and we need your help to find a cure for Aubrey, and for all of those affected by CF.
The median life-expectancy of those with CF is around 40 years old, which has increased drastically just in the last 10 years,but is still way too young. Although√‚¬†real progress has been made in the search for a cure,there still is no cure for this devastating disease. By walking today, I am helping add tomorrows for Aubrey and for all of the people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.