You wouldn’t know by looking at SKYLER that he has a genetic disease slowly taking his breath away. He had surgery at four days old and was diagnosed at 3 weeks.
We didn’t know what Cystic Fibrosis was. Rare mutations, salty skin, lung function, airway clearance, pancreatic enzymes and life expectancy were all new words and phrases.
Now he is 10 years old and in 3nd grade. He loves school and is SUPER smart! He’s just a regular kid most of the time. Running, swimming, jumping, playing video games with his family and friends. But there are a lot of things he HAS to do to stay healthy.
He uses a special machine called an airway-clearance device that helps to break up the mucus in his lungs. He does this twice a day for 30 minutes each time. He also takes breathing treatments with different types of medicine twice a day for 20 minutes each time.
When he was 2, he got a Mickey button. It’s a special feeding tube in his tummy. He takes nutritional formula through it at night while he sleeps. His pancreas does not absorb nutrients from food (that’s the CF) and he takes pancreatic enzymes every time he eats anything. It’s about 32 pills a day.
Sometimes he needs extra care and has to go in the hospital for 2 weeks at a time. They call it a “Tune-up.” Sometimes there are surgeries, but always extra treatments and aggressive antibiotics.
Please join us at Great Strides Walk for a fun, family-friendly event that raises funds for research, awareness and support for people with CF and their families. Go TEAM SKY WALKERS!
If you would like more information about cystic fibrosis, please visit the Cystic Fibrosis Webpage at: https://www.cff.org/Memphis/
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.