Eighteen years ago we got the news “Your daughter Jadyn has Cystic Fibrosis (CF)”.We did not know what that meant or how it was going to impact the rest of our lives.
Cystic fibrosis is a progressive, life-threatening genetic disease that affects the lungs and digestive system. The body produces thick and sticky mucus that clogs the lungs and obstructs the pancreas. This causes persistent lung infections because the sticky mucus allows germs to thrive and multiply and limits the ability to breathe over time. The buildup of mucus in the pancreas also stops the absorption of food and key nutrients, resulting in malnutrition and poor growth. In the liver, the thick mucus can block the bile duct, causing liver disease.
Breakthrough treatments have added years to the lives of people with cystic fibrosis. In the 1050’s a child with CF rarely lived long enough to attend elementary school. When Jadyn was born in 2005 you were told she might not make it to college age. Today the median predicted survival age is 56 years old.
While there has been considerable progress in treating this disease, there is still no cure and too many lives are cut far too short.
CF does not stop her from doing what she loves. She is a Senior at Jupiter High School in the Medical Academy and dual enrolled at Palm Beach State College. This fall she will be heading to Auburn University – Animal Sciences, Pre-Veterinarian Medicine.
She has done competitive dance and won several titles at Tremaine Competition in Orlando and Shake the Ground in West Palm Beach. In the fall of 2020, she joined the Winter Guard Team at Jupiter High School and in 2021 she was in Color Guard with the Spirit of Jupiter – Jupiter High School Marching Band and they won the 2021 State Championship and Best Color Guard.
Jadyn has a passion for animals so in her free time she volunteers at the Big Dog Ranch Rescue and Furry Friends and has done several clinical hours with the Furry Friends Veterinary Clinic. And… she still found the time to get a part-time job at Crumbl cookies where is has been working for the past 2 years!
Most people that know Jadyn usually comment “But… she doesn’t look sick” or “is it contagious?” or “why is she always coughing?”
For Jadyn to be able to attend school and participate in all her activities she has to do several nebulizer treatments for 45 minutes twice a day, wears a vest system that vibrates her lungs and takes over 30 pills a day (yes per day!!!!). This is on the routine “healthy” days… it triples when she gets a simple cold. CF is an invisible disease that is destroying you from the inside… most people don’t see her daily routines and struggles because she is always smiling no matter what. This means her day starts at 5 am doing treatments in order to be ready and be at school by 7 am. Then after school she does her homework and gets ready for Winter Guard practice. On Guard practice days she gets home after 9pm and still has to have dinner, shower, finish her homework and do her night treatment for another 45 minutes. This means she gets to go to sleep around midnight. It is a long day and not a lot of sleep for a 18-year-old!
Your support is crucial for the advancements in research for new medications. In late 2019 the FDA approved a new therapy for CF called Trikafta, a breakthrough therapy that will help more than 90% of CF patients treat the underlying cause of this disease and improve lung function by 10-14%. Although this is not a cure it is a step closer. Since Jadyn started this medication, her health improved drastically. She rarely coughs and her lung function has returned to normal levels. We are hopeful that this will improve her quality of life keeping her lungs healthy and extending her life.
Please support Team Jadyn Cox!
Help us reach our fundraising goal by sponsoring or donating to our Great Strides fundraising campaign. Your gift is tax deductible.
Your support will help accelerate innovative research and drug development, as well as advance care and advocacy. We are working every day to build on this incredible momentum, and we won’t stop until there is a cure for all people living with CF.
You can also join Team Jadyn Cox on Saturday, May 13, 2023 at 9:00 AM for the 2023 Great Strides to support Cystic Fibrosis (CF). The walk will start at Dreher Park South, in West Palm Beach. There will be food/refreshments provided by the local CF chapter.
Click here to join and support our team: http://fightcf.cff.org/goto/TeamJadyn2023
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.