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Why you should run…….a local CF family’s story…..
“bills that would easily total over $50,000/year…..”
Airway clearance therapies using inhaled medicines, two to three times a day with chest percussions that took about one hour per child, enzymes before all meals and snacks, a morning and night ritual of nasal sprays, asthma med’s, antibiotics, vitamins, and many other preventive med’s are given to Matt, Kelli, & Kristen as young children with cystic fibrosis. It was also a demand to give them high calorie diets to increase weight gain, hoping to minimize malnutrition. There were also many well & sick doctor’s visits to juggle between all of the everyday duties of life. It was normal to receive prescription bills that would easily total over $50,000/year per child for just two of their required medications. There was only a 25% chance with each pregnancy that we would have had a CF child. Even so, our children are the most precious treasure we have. As the years and medications seemed to increase, so did our faith that one day there would be a cure and that our prayers of faith would be seen not only in our dreams but in reality. The number of 10-14 day hospitalizations of iv antibiotics increased with the girls as they have battled episodes of infections, but Matt, now a chemical engineer major, has avoided hospitalization altogether at the age of 21. There have been battles to gain weight but with the help of preventive care through Georgia Health Sciences Cystic Fibrosis Center, we have always pulled through. Some may look at the average median life span of CF patients and think that mid 30’s and 40’s is acceptable—not in our home. We fully expect our children to live long and live strong as they maintain healthy preventive care and as they stand firm in who they are in Christ Jesus. We have always been dedicated to care for our children as GHS Cystic Fibrosis Center advises, but CF has never been the focus nor limits our lives. We would rather focus on the goal to make sure that our family as well as other CF families experience helpful new drug developments and ultimately a cure. This is why I began this Miles for Cystic Fibrosis – Augusta team as a charity affiliate with the Augusta Half Marathon. My friends and family have joined in this effort to see this goal through. Please consider helping me fight this Marathon disease with your run as a team member or by becoming a volunteer on our team to reach out to cystic fibrosis patients everywhere.
What is cystic fibrosis and how can you help?
Cystic fibrosis is a life shortening, hereditary disease that affects 30,000 people in the United States. There are many stories like Holt’s in our Georgia-Carolina area. The primary attack of the disease compromises the health of the lungs and digestive system. The Cystic Fibrosis Foundation is diligently working to extend the CF patient’s average live span of thirty plus years by creating preventive care medications, researching a cure, and by assisting in the funding of local CF clinics like Georgia Health Sciences University pediatric and adult clinic. GHSU CF clinic staff in Augusta, Georgia consists of a dedicated team of doctors, nurses, and volunteers who help bring compassionate care, education materials, incentive gift cards for pediatric patients, gas cards, and many other services that directly impact our local CF patients through the funding of GHSU Foundation too. As each runner and volunteer participates in Miles for Cystic Fibrosis Team, the funds they raise will equally benefit the Cystic Fibrosis Foundation and the GHSU Foundation.