I always hear: “She doesn’t look sick” or “is it contagious?” or “why is she always coughing?”
Our daughter Jadyn has Cystic Fibrosis (CF).
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 obstruct 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 47 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 freshman at Jupiter High School taking 3 college classes and 3 high school honors classes and enrolled in the Medical Academy. She is 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. She does ballet, jazz, lyrical and musical theater. She has a passion for animals so on her free time she volunteers at the Big Dog Ranch Rescue and Furry Friends.
For Jadyn to be able to do all that she does 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. This means her day starts at 5 am doing treatments in order to be at school by 7 am. Then after school she has an hour to do some homework and get ready for dance. She dances for about 3 – 4 hours a day, then comes home around 8 pm and has dinner, showers, finishes her homework and does her treatment for another 45 minutes. This mean she gets to go to sleep around 11pm or midnight. It is a long day for a 15-year-old!
Your support is crucial for the advancements in research for new medications. In late October 2019 the FDA approved a new therapy for CF called Trikafta in less than 3 months of submission because it is a breakthrough therapy that will help more than 90% of CF patients treating the underlying cause of this disease and improving lung function by 10-14%. Although this is not a cure it is definitely a step closer.
Jadyn was approved to start Trikafta in January 2020 and she has started taking it this past weekend. 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.
You can also join Team Jadyn Cox on April 18, 2020 at 8:00 AM for our annual fundraiser walk to support Cystic Fibrosis (CF). The walk will start at the Meyer Amphitheater in West Palm Beach. We will be walking along the water in downtown West Palm Beach and concluding with some food and music for all to enjoy.
Click here to join and support our team: http://fightcf.cff.org/goto/TeamJadyn2020
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.