"The test is positive for Cystic Fibrosis. You guys, I am so, so sorry."
We knew by the look on her face as the door opened, but hearing the words changed our lives forever. I still feel the ringing in my ears as I write this.
We couldn't believe this thing called CF was now a part of our lives. But, for our boy, this was always meant to be his ticket to this world - Cystic Fibrosis was decided ten months prior and is as much a part of him as are those beautiful blue eyes.
We had a lot to process, a lot to learn and even more to do. But, one thing we have learned over the past year is this: There Is Hope.
There are approximately 30,000 Americans living with CF. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who fight this devastating disease every single day. We walk for our little buddy AND all the other CF'ers out there who fight back against CF all day, every day.
Think your day is busy? How might you feel if you removed 1-2 hours a day, every single day, for the rest of your life? That's the logistical side of CF that goes unseen. Nebulizer treatments followed by CPT (Chest Physical Therapy) account for 60-90 minutes per day. Then there's taking and sorting medications, dealing with insurance, sanitization of the home, workplace, car, medical devices, doctors visits, etc that add even more to the plate of CF Fighters.
Then there's the reality that every single day that goes by fighting CF takes a little more sand out of the hourglass for CF'ers than it does for the rest of us. But, we fight back! Every single day, we fight back. We fight for more breaths, for more days, for more years and we fight for a cure.
Overall, the news in the CF community has been OUTSTANDING the past six months. A new drug called Trikafta was approved by the FDA last fall and the results have been very promising. It is, by far, the best and most impactful medication created in the history of Cystic Fibrosis. It is a game-changer!
It helps to make the body work more as it should, but at the end of the day it results in about a 15% increase in lung function for most CF'ers. As you can imagine, this is FAR from being a cure. It is, however, the biggest step (or maybe even leap) toward a cure in history.
This drug wouldn't exist without donations from efforts such as this Great Strides walk. The CF Foundation provided funding and support for Trikafta to become the blessing it is - and they continue to put resources toward better/new drugs and treatment options to add more sand back to CF'ers hourglasses. That said, 10% of Fighters are not even eligible for this drug because it does not work on the mutations they have.
Our family has had bittersweet emotions over the past six months with this great news. While our CF'er will be lucky enough to benefit from Trikafta somewhere down the road, not everyone is. There are 1,800 and counting mutations that result in CF. This drug does not work for all of them. WE NEED DRUGS FOR EVERY SINGLE MUTATION. Our hearts go out to the families/CF'ers who are still waiting for their big day. That day will only come with continued awareness, support and research. We walk for them. We cannot wait to see their reactions on their amazing days just as they sat by and watched ours last fall.
In our home we work daily to fight back against CF to keep our boy healthier than he would otherwise be with no treatment, medication, etc. We do that with the hope researchers will continue to make breakthrough medications/treatments to help end this thing for everyone once and for all. Please consider joining us on our walk, or donating to the cause.
CF WILL stand for Cure Found someday. There is no doubt in our minds. Let's make that day get here as soon as possible!
Our team name is: Anver's Army. You can join us by clicking this link. Hopefully we'll see you there (we'll have plenty of hand sanitizer if you want to hug the little man).
If you are still with me here, THANK YOU for reading. Thank you for thinking of us. Thank you for being a part of our journey.