When Paxton was born she was tiny but no one was super concerned about her weigh until she started losing it. After 2 weeks... of close observation her amazing pediatrician suggested that we go to a hospital about 30 miles away for some testing. Paxton was tested for anything and everything you could think of. She had everything from EEGs, to EKGs, Ultrasounds, X-rays, Spinal Taps, and everything in between but nothing was found to be wrong. After a few days of negative results her newborn screening for Cystic Fibrosis had come back positive. The hospital she was at acted like this was a death sentence and that she was going to die instantly. Paxton was then transferred by ambulance to Arnold Palmer Hospital for Children in Orlando, Fl. As soon as she arrived at Arnold Palmer all of the medical staff was amazing and full of hope for this little girl. Paxton had a sweat test and genetic blood work done and was released to go home. A week later she was back in Orlando for the results and diagnosed with Cystic Fibrosis. She has a Double Delta F508 mutation. Since diagnosis her life has been pretty chaotic. She takes numerous medications daily, does breathing treatments, has chest therapy, goes to physical therapy, has a feeding tube, and goes to many doctors appointments. She has had some extended hospital stays but none have been sick visits. Through all of this she is an amazingly well adjusted, sweet, smart, sassy, normal, 6 year old little girl. This disease is what she has it is not who she is. She is stronger because of CF and so are we. She fights Cystic Fibrosis everyday of her life and because of her we fight too. We will never stop until CF means Cure Found.
Join our team and help add tomorrows!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
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.