Hi Everyone!

For those of you who don’t know me, my name is Rochelle Rose. My baby girl, Blake, was born on July 18th. After a few days in the hospital, we brought Blake home! Eight days into our parenthood journey, we received a call that would change our lives forever. The voice on the phone stated that our daughter had an abnormal result on her newborn screening for cystic fibrosis. We hung up the phone and immediately turned to Google who assured us that this abnormal result was simply a false positive, after all cystic fibrosis is incredibly rare. The following day we anxiously arrived at the Mountain State CF Care Center. The nurse entered the room and explained to us that Blake had two mutations which confirmed her diagnosis. We immediately asked how long our baby girl had to live. She explained to us that cystic fibrosis is NOT the disease that it once was. She told us that Blake's genetic mutations allowed her to be eligible for "a miracle drug" that would essentially, with some behind the scenes work, allow her to have a healthy mostly "normal" life. As our heads spun, we learned about enzymes and why they were important. We learned about future breathing treatments and long term goals for Blake. We learned what our new life was going to consist of. After what felt like an eternity in that doctor's office, we left for home. We were heartbroken. For the next few days, we hid from the outside world hoping that this was some awful nightmare we were bound to wake up from. A few days later, with the support of our amazing families, my husband and I took a breath. We could do this. We did our research. We learned as much as we could. We found a community. Soon, those strangers that gave us the worst news of our lives, became our family.

Shortly after Blake’s diagnosis, I decided to sign up for RoseUp. A few days later, I received a call from Jean, the Associate Executive Director of the CFF. She introduced herself and explained her role at the Cystic Fibrosis Foundation. I talked to her for nearly an hour. She reassured me that everything was going to be okay. She told me countless stories about CF kids who are thriving! She told me about how close the CF community is and how my family would never be alone in this fight. Looking back, I can honestly say it was this call that changed my entire outlook and attitude on our situation. I could make a difference. I wanted to be a part of this community. I wanted to raise awareness and do anything that I possibly could to help find a cure for my daughter’s condition. This was my new mission.

When our first Great Strides rolled around, we created a team and hoped to raise enough money to get a T-shirt. We never expected the response that we got from not only our family and friends, but complete strangers. Our second year was even more successful. This is our third Great Strides event and we want it to be our absolute best! 

We are 2.5 years into our CF journey. In July, Blake started her miracle drug. We are still early in our Trikafta journey and we are praying for an amazing outcome. Looking back, we are not the same people who walked into clinic. It’s very easy to live in the “Why did this happen to us?”.   Now we know the answer to this. We were chosen to raise awareness and advocate for those who suffer from cystic fibrosis. We have always been blessed with amazing families and friends who stand by us through thick and thin, a support system many people wish for. Now, we are blessed with the most wonderful CF care team who we truly love like family. We are blessed with a foundation that welcomed us with open arms. A foundation that truly cares. We are blessed with Blake who acts as our strength and motivation to fight CF each day. We were recently blessed with our second baby girl, Nova, who joined our family in November. Thankfully Nova is not affected by cystic fibrosis but we are positive she will be her sister’s biggest advocate and supporter.

Please consider joining our team and donating to our cause. Every donation helps find a cure for cystic fibrosis… a cure that I pray my daughter sees in her lifetime.