Fourteen years ago, (almost to the day), my husband and I learned that our daughter, Grace, has cystic fibrosis (CF). Our sweet, spunky, and happy two-year-old had been incredibly sick for months and was in and out of the hospital with no diagnosis other than pneumonia and other respiratory issues. I still look back and wonder how it was missed. She weighed under twenty pounds yet ate around the clock and constantly labored to breathe. The diagnosis was devastating but also ended up being a blessing because we finally knew what we were dealing with and were able to get her treatment.
In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive and permanent lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. There is currently no cure and the median predicted survival rate is 40 years.
Grace looks seemingly healthy; however her lung function is decreased, breathing is difficult, and she has a nasty and persistent cough. Frequent lung infections make it necessary for her to be hospitalized every year or two for aggressive lung and IV therapy.
To put it mildly, Grace is feisty and doesn’t let CF slow her down. She is an athlete, an honor student with aspirations of attending UVa, and has an active social life. My job as her mom is to support her in every way possible and raising funds and awareness is a big part of that.
Our family has been actively involved with the CF Foundation for fourteen years in a variety of ways but the event near and dear to our hearts is the Great Strides Walk to Cure Cystic Fibrosis. I have led Team Grace every year and started the local Reston walk ten years ago. This year, I proudly pass leadership of Team Grace and the Reston walk site over to Grace.
Our walk is scheduled for Sunday, May 21st. For more information about Grace and more details about the walk, please visit Grace's page and/or My Page.