My Great Strides Story
Bob Rose
Bob Rose
For those of you who are new to our team, my wife, Rochelle, and I would like to welcome you to our team. On July 18th, our beautiful baby girl, Blake, was born measuring 18.5 inches and weighing only 6 lbs 4 oz! After a few days in the hospital, my wife 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 WVU Mountain State CF Care Center. We asked 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. We were heartbroken. We immediately asked the caregiver how long our beautiful daughter 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. 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 wife 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 18 months into our CF journey with our amazing, beautiful, hilarious, sassy baby girl. Since last year, our life looks a little bit different! We still take enzymes with snacks and meals. We still do 2 different breathing treatments twice a day. We still do airway clearance twice a day - but now we have an amazing vest for this! And in less than 6 short months, Blake will start her "miracle drug" TRIKAFTA. We are praying that Blake will have an amazing response to this with little side effects and no complications.
Looking back 18 months ago, we weren't nearly as knowledgeable, hopeful, or determined as we now are. It's very easy to live in the "Why us?". Over the last 18 months, we now 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 consider a part of our family. We are blessed with the most rambunctious intelligent little girl that acts as our strength and motivation to fight CF each day. We are blessed with a foundation that welcomed us with open arms. A foundation that truly cares.
The Cystic Fibrosis Foundation is determined to find a cure for cystic fibrosis and will not stop until this is accomplished. Thanks to this incredible foundation and all of the generous donors we are making a huge impact! Since 2020, the CF Foundation has funded more than $1 billion in research and care with the following highlights: $238M for genetic therapy research that may benefit all people with CF, regardless of their mutations. $98M for the next generation of CFTR modulator therapies to give people with CF a choice in their treatments. $308M for research into CF complications including infection, inflammation, digestion and CF-related diabetes. $195M for care and initiative at foundation accredited care centers. In the next few years, the foundation projects spending $2 billion to advance research and care with 90% of funding being allocated towards a cure, care, and the CF community and 10% allocated towards operations such as finance, human resources, and technology. This foundation uses every donation to try to find a cure for cystic fibrosis.
We trust and pray that with your donations and support, Blake will see a cure for cystic fibrosis within her lifetime.
Lastly thanks to the generous donations of so many amazing people, Team Blake was honored with the Rookie of the Year Award in 2024 for the CFF Western PA Chapter which includes parts of WV. We want to thank everyone for all of their generous donations in 2024 and ask to please consider donating in 2025 to help us cure cystic fibrosis for our baby girl and so many others!
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