We formed Champions of Hope in 2011 after our daughter, Neila, was diagnosed with CF in 2010 shortly after birth. At just 2 days old Neila had to have intestinal surgery to remove meconium, which had become stuck. At this point we were informed that 90% of meconium ileus cases were caused by Cystic Fibrosis. These were two words we had never heard before and we didn't even know the meaning of them. After nearly 2 weeks in the NICU we were able to take our baby girl home. We have been doing what we can to keep her lungs healthy and her at a healthy weight ever since. We also deal with bowel blockages on a regular basis, which means she receives Miralax daily.
Von was diagnosed before birth and with a 1 in 4 chance his diagnosis was positive for CF. Even though they have the same mutation these kids are opposite in almost every way. We struggle to keep Neila above a 50% BMI whereas Von has no problem with that at all.
Everyday these 2 kids wake up and use their albuterol inhaler, nebulize hypertonic saline (7% saltwater), which takes approximately 15 minutes, and then they use a shaky time Vest to help loosen any mucus in the lungs for 30 min. Throughout the day they take lots of pills, whether it's a vitamin or low dose antibiotic that helps with inflammation. Every meal they eat, enzymes must be taken to help them digest their food. At night, the same routine starts again. However, this time they must also nebulize another medication called Pulmozyme before the shaky Vest. This medication is to help thin the mucus in the body and it takes about 15 min. After their Vest, they have sat through nearly an hour and a half or more of treatments for the day, most of that being before bedtime. As you can imagine these young people have a hard time sitting still but they do it everyday because that's all they know. During sick protocol they could do these treatments 3-4 times a day.
CF is a disease in which you can look fine on the outside but inside you could be falling apart. You never know when your child may become ill and that illness can cause irreversible damage to their lungs. One tiny cold that may not be a big deal to others could cause a hospital admission for our children. We fight everyday to keep them as healthy as possible.
Please support us by making a donation in any amount possible. Even the smallest amounts add up, be it $5, $20 or even $50. If you cannot spare even a small amount please support us by sharing our story and spreading awareness.
Great things are in the works that could drastically extend our children's lives so they may hopefully outlive us. Help us reach our fundraising goal by donating to our Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them and hope you will support us in our efforts.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.