Ivy’s League is driven by a dream that one day, EVERY person with cystic fibrosis will have the chance to live a long, healthy life. You can help us reach that goal!
Our Great Strides Story
On Ivy’s 5th day of life, something felt a little “off “, although she looked perfect, she had no energy, she was eating and having diarrhea. On day 7, we took her into the pediatrician office because she was so sleepy at this point and started missing meals, we would take some actions over the weekend and return on Monday 7/25 for a weight check. It just so happens that when our Pediatrician got to the office that morning, the state had faxed over results from blood work taken in the hospital that said Ivy had CF. We had already been scheduled for 9:30am that morning so when Dr.Benson gave me this news I was in complete shock, confusion and completely scared out of my mind for my sweet girl. The next day we met with the CF team in Augusta, we were given more information than we could handle but we learned all of the advancements made in the CF world, that while our life will look different than we planned, will have bumps in the road and require daily work to keep Ivy healthy, she will live a long, active life and for that we are so thankful. Currently Ivy takes enzyme medication before every bottle to help her body absorb nutrients from her food as she is pancreatic insufficient (this is why she was so tired, she couldn’t absorb nutrients), when she’s healthy she gets two “beatings” a day for 30 minutes each, it’s a workout and a wrestling match if we’re not able to time it perfectly with her nap. She also does albuterol with every treatment. If she’s sick we do 3 treatments a day, and extended antibiotics. Bi monthly we check for throat cultures to see if she’s growing any bacteria that can cause a exacerbation in her lungs, causing damage. We do blood work and imaging to watch her liver levels as she was diagnosed with CF related liver disease but we hope this heals. We should get a vest when she’s a year and start nebulizers then as well. We don’t share this for sympathy, simply sharing to help us feel understood as this is part of our life and we’re so passionate about finding a cure!
Our Ask, if you feel lead to:
Please join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this team" button. From there, you can donate and start fundraising.
As a member of our team, you are joining a growing community of people committed to finding a CURE for cystic fibrosis. Together, we can make CF stand for Cure Found.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.