My Xtreme Hike Story
Marian Ragsdale
Fundraising for North Carolina Fall Xtreme Hike
Marian Ragsdale
The Ragsdale Family invites you to support us as we embark on the Cystic Fibrosis Foundation NC Xtreme Hike for a Cure on Oct. 11. We’ll be hiking 30.1 miles of the Appalachian Trail in one day with a goal to raise $20,000 for genetic research to Cure CF!
James' Journey...
On April 1, 2023 at age 21, James III received his Cystic Fibrosis diagnosis. What first felt like devasting news quickly became a blessing. How can learning your child has a chronic genetic disease be a blessing? Because it was finally an answer to James’ life-long health issues.
Cystic Fibrosis (CF) is the result of a defective gene that causes the body to produce unusually thick, sticky mucus that clogs your airways and can lead to life-threatening lung infections that over time can result in severe lung damage leading to lung transplant. The mucus also obstructs the pancreas and stops natural enzyme production that helps the body break down and absorb food and can cause other serious gastrointestinal health issues.
CF is commonly diagnosed just days or weeks after birth, but James didn’t have typical CF symptoms at birth or throughout his toddler years. By the time he developed symptoms in elementary and middle school, he was far beyond the typical age of a CF diagnosis, so no one suspected CF. Beginning in 2019, James experienced more serious health issues including sepsis due to pancreatitis, an emergency appendectomy, and removal of his gall bladder. His chronic cough that had been diagnosed as allergy induced asthma in middle school became much worse, and he experienced significant weight loss. Shortly after being diagnosed, we learned James was a candidate for the newest CF medication, TriKafta. Within two weeks of starting TriKafta, his lung function dramatically improved and he literally stopped coughing! He had been living with compromised lung function for so long that he said “I never knew my normal was so bad.” He takes 3-5 enzyme pills with every meal so his body can absorb food correctly and has gained 30 pounds since his diagnosis. The medication is not a cure, so James still goes for his quarterly CF clinic appointments to monitor all aspects of his lung and gastrointestinal health.
Unfortunately, due to the wide variety of mutations in the CFTR protein that cause Cystic Fibrosis, many people living with CF don’t respond to the new medications or they can’t tolerate the side effects. Some are still facing a greatly shortened life span, lung transplant, and many other serious complications caused by CF.
The goal of the Cystic Fibrosis Foundation is to find a cure for CF. They are on a sure path to success through genetic research that is funded by families and friends of those living with CF. The CF Foundation receives no federal funding for research.
THANK YOU for supporting this life-giving and life-saving research with your gift to our Xtreme Hike Team! With your help, we will find a cure!
James' Journey...
On April 1, 2023 at age 21, James III received his Cystic Fibrosis diagnosis. What first felt like devasting news quickly became a blessing. How can learning your child has a chronic genetic disease be a blessing? Because it was finally an answer to James’ life-long health issues.
Cystic Fibrosis (CF) is the result of a defective gene that causes the body to produce unusually thick, sticky mucus that clogs your airways and can lead to life-threatening lung infections that over time can result in severe lung damage leading to lung transplant. The mucus also obstructs the pancreas and stops natural enzyme production that helps the body break down and absorb food and can cause other serious gastrointestinal health issues.
CF is commonly diagnosed just days or weeks after birth, but James didn’t have typical CF symptoms at birth or throughout his toddler years. By the time he developed symptoms in elementary and middle school, he was far beyond the typical age of a CF diagnosis, so no one suspected CF. Beginning in 2019, James experienced more serious health issues including sepsis due to pancreatitis, an emergency appendectomy, and removal of his gall bladder. His chronic cough that had been diagnosed as allergy induced asthma in middle school became much worse, and he experienced significant weight loss. Shortly after being diagnosed, we learned James was a candidate for the newest CF medication, TriKafta. Within two weeks of starting TriKafta, his lung function dramatically improved and he literally stopped coughing! He had been living with compromised lung function for so long that he said “I never knew my normal was so bad.” He takes 3-5 enzyme pills with every meal so his body can absorb food correctly and has gained 30 pounds since his diagnosis. The medication is not a cure, so James still goes for his quarterly CF clinic appointments to monitor all aspects of his lung and gastrointestinal health.
Unfortunately, due to the wide variety of mutations in the CFTR protein that cause Cystic Fibrosis, many people living with CF don’t respond to the new medications or they can’t tolerate the side effects. Some are still facing a greatly shortened life span, lung transplant, and many other serious complications caused by CF.
The goal of the Cystic Fibrosis Foundation is to find a cure for CF. They are on a sure path to success through genetic research that is funded by families and friends of those living with CF. The CF Foundation receives no federal funding for research.
THANK YOU for supporting this life-giving and life-saving research with your gift to our Xtreme Hike Team! With your help, we will find a cure!
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