Seventeen 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 the life expectancy was 35 years old. Today the median predicted survival age is 48 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. This still means that Jadyn's life expectancy is lower than my age today!!!! The past two years have been even more challenging with Covid-19 pandemic. Jadyn was just about quarantined from everything for over a year before she was to get the Covid-19 vaccine. This school year she is back at school in person and resumed most of her normal activities (obviously modified to continue all the precautions needed to keep her safe and healthy).
CF does not stop her from doing what she loves. She is a Junior at Jupiter High School in the Medical Academy and dual enrolled at Palm Beach State College.
In the past few years, she was a competitive dancer with Jupiter Dance Academy Performance Company 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 participated in several Winter Guard competitions. And this past year 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 some clinical hours with the Furry Friends Veterinary Clinic.
And… she still found the time to get a part-time job at Crumbl cookies!
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 17-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 14, 2022 at 9:00 AM for the 2022 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/TeamJadyn2022
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To help minimize the risk of COVID-19, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.