My Great Strides Story
Lauren is a bright, caring 10-year-old who loves music, cats, and playing outside in her fort. She is also a fighter. Lauren was diagnosed with cystic fibrosis as an infant. Cystic fibrosis (cf) is a rare genetic mutation that affects approximately 40,000 Americans. It causes the mucus lining the lungs and digestive organs to be unusually sticky. This thick mucus then clogs airways, making it hard to breathe. Digestive complications occur as well.
Because of the nature of cystic fibrosis, daily care is needed to keep the lungs healthy. Each day Lauren straps on her cf vest, connects the two hoses, and turns on her treatment machine. This machine forcefully pumps air through the connected hoses, inflating the vest, which pounds on her chest and back to loosen mucus. These treatments last 30 minutes and are done every morning and evening. During treatment comes inhaled medications through a nebulizer: 15 minutes of saline and 15 minutes of an enzyme that thins mucus. Before strapping on her vest Lauren inhales albuterol to open her airways during the vest treatment. Daily treatment totals an hour and is increased to an hour and a half if Lauren has a respiratory infection like a cold. At the end of every day three nebulizers are washed and sterilized to be ready for use the next morning. To aid in digestion Lauren takes special pills containing enzymes with all her meals and snacks. She also takes a twice-daily pill that helps her cells function more normally. A cf vitamin rounds out the daily pharmaceutical cocktail.
Lauren’s cf by the numbers:
Daily medications – 7
Daily number of pills swallowed – 17
Daily treatment time – 1-1.5 hours
Daily nebulizer sterilization routine – 30 minutes
Weekly time devoted to CF care – 10.5 – 14 hours
Yearly number of CF Clinic visits – at least 4
Our family is so grateful for the Cystic Fibrosis Foundation. Because of this organization, Lauren sees an accredited team of health professionals every 3 months (clinic). CFF has sponsored the research and development of virtually every drug on the market today in the treatment of cystic fibrosis. In fact, since its founding in 1955 the Cystic Fibrosis Foundation has seen the median survival age of patients with cf rise from less than 10 years to over 55 years. Since Lauren’s birth we’ve seen the development of breakthrough medicines – medications that change the body’s functioning at the cellular level. More breakthroughs are on the horizon, but there is still no cure for cf.
We are asking you to join our team, Bailey’s Bulldogs, in support of the Cystic Fibrosis Foundation. Bailey’s Bulldogs has raised over $50,000 through the years to help find a cure for cf – thank you for your generosity! Our goal this year is to raise $5,000 by April 20.
Thank you for your support!
Steven and Robyn Bailey
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.