Cure for Caroline

Our sweet Caroline was born on April 28th, 2016 and diagnosed with Cystic Fibrosis one month later - a complete surprise to us!   CF is caused by each parent carrying a mutated gene. Neither Adam nor I’s families were ever aware that we might be carriers of this gene mutation.   For Caroline, this possibility was caught via the NC Newborn screening. We then went through a grueling month of testing and waiting for a final diagnosis- all the while noticing symptoms such as extreme weight loss and strange mucus in our tiny newborn.   At a month old she was finally diagnosed and our lives changed forever.  We were immediately set up with the CF team at Brenner where we Underwent hours and hours of appointments to “teach” us about this disease - to teach us the “fate” of our baby girl.  (This is also where we’ve met doctors and nurses that have been bright shining stars in our girls life )

CF can be a scary disease.  It affects every organ of the body with an overproduction of thick sticky mucus.   This causes devastation of the lungs, sinuses, pancreas, digestive system, and so much more.   Average germs such as a cold or the flu can wreck havoc on a CF body.   As a CF parent, we live on high alert for a new cough.

Caroline carries two copies of the Delta 508 gene mutation- this is the most common form of CF, but is also considered more severe.  Therefore, we preventatively treat all organs against damage the best we can.  She does daily treatments for her lungs, regular sinus medication, and follows a strict routine for her digestive system.   If she catches a cold, some of these treatments are doubled every day.   She’s a trooper, but at almost 8 years old, it can be very difficult to accept why she has to do so many things that her friends do not.  ☹

GOD has been with Caroline since day one and thanks to His power and new research, there is SO MUCH to look forward to!    3 years ago, Caroline began taking a new gene modulator, Trikafta. Trikafta has been proven to stop disease progression in it's tracks, and in some cases, actually reverse damage.  Since starting Trikafta, we’ve noticed a lesser need for antibiotics, and less serious digestive symptoms for Caroline.  We pray this will continue.  Trikafta will hopefully extend Caroline's life further than ever imagined.

For all of this, we are so grateful.  However, we know the battle is not yet won.  Trikafta is not approved for 10% of the CF population- that 10% needs options!  For those approved for it, it comes with side effects and is not a fool proof cure.   It also rings in at a whopping $28,000 per month and leaves families scrambling for grants and assistance every month.  

WE NEED A CURE.
A cure for Caroline and for the 30,000 Americans struggling with this disease.
Join us and help us get one step closer.   We want these kids to breathe freely and to enjoy a LONG and HEALTHY life.  

We walk in Great Strides for them.

Will you join us?

To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.