Six days after Russell was born, we received the results of the newborn screening that Russell was diagnosed with Cystic Fibrosis, Double Delta F508 mutation.
We quickly learned that Russell is pancreatic insufficient which means he needs to take pancreatic enzymes to help process the fat in his food. Russell was unable to gain weight without the help from his enzymes. At his first couple appointments, Russell was in the 11th percentile for weight. Russell began taking his enzymes with applesauce at 6 days old. He quickly began gaining weight. Fast forward to now, 16 months old, he is in the 93rd percentile! In Russsell’s CF journey, we will always be monitoring weight gain. This is something that can be a challenge for people with CF. We are thrilled with his growth and hope that he continues to maintain a healthy weight. Although his weight is great right now, we will always monitor him for signs of malabsorption.
In addition to needing his enzymes, every day Russell receives manual chest PT, or “Pat Pat” time as he calls it. As Russell gets older, he will need additional lung therapies. When Russell is sick, he has a sick plan. He needs nebulizer treatments 3 times a day with albuterol and a hypertonic saline solution followed by chest PT. These treatments take almost an hour to complete from start to finish. All of these treatments help keep his lungs clear.
Each step of the way, we are learning.We are thankful for his team at Children's Hospital and we are so lucky to live close to the best hospitals in the country! They have kept us informed and have been guiding us along this journey. Research is getting closer to finding the answer. By understanding how the protein is made, scientists have been able to develop treatments that target the protein and restore its function.
The CFF gets no federal funding and the research is funded by your donations! We appreciate your support to help Russell have a brighter future and as well as other children and people with Cystic Fibrosis!
My Great Strides Story
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. I walk for them.
Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
You can support me!
By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.
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