Cystic Fibrosis
What Is Cystic Fibrosis?
Cystic fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF. Our Son Harley has Cystic Fibrosis, and there is not currently a cure. Research and care supported by the Cystic Fibrosis Foundation are making a huge difference in the lives of those with CF but there is currently NO CURE.
The basic overview is that Cystic Fibrosis makes a thick mucus, lining the lungs, pancreas and many other organs. This makes those with CF unable to cough out germs and bacteria in the way many of us can, so they can get sick easier and longer among other medical issues related to CF.
Spikes Bikes knows about this first-hand since our son Harley was diagnosed in May of 2014. It means our son takes over 20 pills a day, has over an hour of physical therapy including a vibrating vest that helps break up the mucus, he breathes in 3 different nebulized treatments and uses an inhaler. Due to the body working so hard to fight off infections he is required to have an intake of over 3,000 calories a day just to gain any weight, this can get expensive but he loves the bacon, LOL. He can eat the foods you usually avoid like bacon since it is high fat, high calorie, high protein and high salt. A CF'ers body loses alot of salt through abnormally salty sweat.
Last summer is when we found out our son Harley has cystic fibrosis, this genetic disease that can effect the lungs, liver and pancreas. Since that time we have joined with this awesome community of CF'ers in raising awareness and money to help find a cure. Recently we found out that they just okayed a new drug that doesn't cure, but helps with some of the effects of many types of CF strands. That is encouraging to all that are running this race. There is no government funding for CF, so all funding is done thru private channels and funds raised by family and friends like you. Please help spread awareness as well as help us to be part of finding a cure by supporting Team Harley's fundraising goals.
You can visit our Facebook page https://www.facebook.com/pages/Team-Harley
and to learn more about Cystic Fibrosis CFF.org
