The page is up and running now! Please help me reach my goal of $5,000 which signifies each year of my transplant journey so far!
Hi, my name is Iva and I appreciate you visiting my DFW’s Finest fundraising page! Most of you probably know me, but in case you don’t, I was born with Cystic Fibrosis (CF) in 1990. Right around the time my diagnosis was given, my parents found out they were pregnant with my younger sister, Bailey. She was diagnosed in utero and my parents were told that both of their children would be unlikely to make it to the age of 18. A diagnosis that drastic was unexpected, especially when it is two children with the same disease. Instead of adopting a “woe is me” perspective, my parents hosted various fundraisers in our hometown of Lakeway, Texas, to bring awareness and raise funds for a cure. Their persistence has contributed to increasing the current median life expectancy to over 40 years old! Since I was heavily involved with the charity work in my younger years, I have continued to bring awareness and raise funds for the Cystic Fibrosis community. I would love if you continued reading to learn more about me!
The nineties felt like a time that medical advancement was happening quickly—and being a kid with Cystic Fibrosis we saw big changes in our medical treatments over the years. Our treatment regimen included various forms of Chest PhysioTherapy (CPT) and breathing treatments. When my sister and I were very young, we only had the option to use manual hand percussions. We would have to utilize gravity and spent the majority of our treatment’s upside down. After a few years, we were able to get a massage gun for our CPT, which also included spending some time upside down. Years later, a percussion vest was created, but it still restrained you from moving around until the twenty-minute session was complete. In fact, the first iteration of this machine was not travel friendly, as it was bulky and weighed over fifty pounds! Many years later we upgraded to a version that was stored within a luggage bag—perfect for a carry-on bag! The last iteration we had was a battery powered vest that allowed us the option to travel with relative ease and even do our treatments in the car. Six different machines in less than twenty years really proves how far we have come!
While we both took our medical treatments seriously, we still required extended hospital stays at least two or three times a year. In the beginning, that consisted of unenrolling from our elementary school and enrolling at the school within Cook Children’s in Fort Worth. These stays usually lasted two to three weeks before we would get discharged. Eventually, we were able to transfer our care to Dell Children’s in Austin and not have to transport everything out of town. Hospital stays were taxing no matter the city we were in. They consisted of being woken up early for CPT Treatments, weigh-in’s, physical therapy, IVs all day and all night, medication times, the works! You’re in the hospital to rest and you can’t get any sleep… Eventually, my parents convinced our doctor that they were able to complete our IV antibiotic treatments at home. This option allowed us to check in to the hospital for a few days and then be discharged for the remainder of our IV treatments. We were incredibly fortunate that our parents had the capability to care for us around the clock, because being home was so much less stressful for all of us.
Being diligent about our therapies and our treatment plans was not completely successful in the long-term. We barely missed the miracle that Trikafta and Orkambi provided for many people with Cystic Fibrosis. I hope that medical advances continue and a full cure for Cystic Fibrosis emerges, since both my sister and I required double lung transplants in our twenties. August 29th, 2022, marks five years post-transplant for me, and September 1st, 2022 is Bailey’s seven year anniversary. Even though this wasn’t the desired outcome, I live with pride that both of us have persevered to this point. I can’t think of a better way to celebrate our transplant anniversaries, than to raise money for a Cure as a DFW’s Finest nominee!
I will soon be honored by the Cystic Fibrosis Foundation at a special event recognizing outstanding young professionals in my community. In accepting this distinction, I have committed to raise money to help the Foundation realize its mission of controlling and curing cystic fibrosis (CF).
Please help me meet my fundraising goal by making a donation. Your generous gift will be used efficiently and effectively to help support vital CF research, medical and education programs.
Making a donation is easy and secure! Just click the Donate button on this page to make a donation that will be credited to my fundraising efforts. Any amount you can donate will be greatly appreciated!
Cystic fibrosis is a devastating genetic disease that affects the lungs and digestive system. More than ten million Americans are symptomless carriers of the defective CF gene. Advances continue to be made in finding a cure, but your help is needed now -- more than ever -- to help keep up the momentum of this life-saving research. Sixty years ago, children with CF usually did not live long enough to attend elementary school. Today, because of Foundation-supported research and care, the median survival age of people with CF is about 40. This is remarkable progress, but not good enough. We continue to lose precious lives to CF every day. To learn more about CF and the CF Foundation, visit www.cff.org. Together, we can make a difference in the lives of those with cystic fibrosis. Thank you for supporting the mission of the CF Foundation!
Hi everyone! If you’re here then you received the link early! I am in the process of filling out my profile still so stay tuned for an update. Thank you so much for checking it out 🥰