Team SKY

Hello Friends of Team Sky Walkers!

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/