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 bed time. 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. Neila now also takes a drug called Orkambi which helps treat the underlying cause of CF. This is also a drug that costs upward of 6 figures a year. Luckily her insurance is covering it but many insurances are put in a bind. Luckily there are patient programs that help out many.
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. This year was especially difficult as both kids had their first 2 week hospitalization in almost 2 years. It was an even more difficult stay for Von who was much sicker than Neila. This is why we fight everyday to keep them as healthy as possible.
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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.
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