Bob Rose

My Great Strides Story

On July 18th, my beautiful baby girl, Blake, was born measuring 18.5 inches and weighing only 6 lbs 4 oz! She was the tiniest baby that I’ve ever seen! After a few days in the hospital, my husband and I brought Blake home! We were nervously and comically trying to figure out how to be parents to this tiny being! Eight days into our parenthood journey, we received a phone call that would ultimately 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 WV Cystic Fibrosis Clinic. My stomach was in knots. I must have seemed scared because I specifically remember the kind nurse telling me “It will get easier”. Of course it will, because this is a false positive result! We answered a lot of questions and went through initial weights and measurements. We went to a room and waited for the next person to enter. When the team member entered, she explained to us that Blake had two mutations which confirmed her diagnosis. My daughter had cystic fibrosis. My heart dropped. Tears flooded my eyes. I looked at my husband who was also in shock. I immediately started crying asking the caregiver how long my beautiful daughter had to live. She explained to me that cystic fibrosis is NOT the disease that it once was. She told me 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. I didn’t understand. Nothing made sense.  As my head 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. The three of us bunkered in our house with our dog and 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 what oddly felt like extended family. We are 6 months into our CF journey with our amazing, beautiful, hilarious, smiley baby girl who has more fight and strength in her 6 month old body than I do at 36. Each day with a smile and positive attitude Blake fights her cystic fibrosis. She takes enzymes with each feeding. We do chest physical therapy twice a day and we do breathing treatments. My daughter is not sick. My daughter has a genetic condition called cystic fibrosis. 

Cystic fibrosis affects the lungs, pancreas, and other organs. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues. 

The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.

Your support makes a difference.

By donating to my fundraising goal, you will help advance a mission that means everything to me and my family- a cure for cystic fibrosis. A cure for Blake. Please consider joining us and helping make CF stand for Cure Found