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What is Cystic Fibrosis? In cystic fibrosis, salt water is not able to be moved in and out of the cells in order to cleanse the body. A build up of thick and sticky mucus lies in different parts of the body, making breathing and digestion difficult or impossible.
It's What's on the Inside that Counts! When people see Drew, he appears healthy, and seems to be doing well. That is the case at this moment, but many do not realize that things can change very quickly and begin to spiral downward in a matter of days, weeks, or months. He works so hard everyday to prevent any irreversible damage to his lungs, but even so, he is in danger every day.
A Typical Day for Drew! Although Drew may look great from the outside, what is going on inside is catastrophic! He takes 20 pills a day just to eat and undergoes 2-3 hours of respiratory therapy to breath like everyone else! Can you imagine not being able to just take a quick bite of something or getting up an hour and a half earlier in the morning to be hooked up to a machine.....just so you can breath that day? Think about telling your children that they have to be done playing outside because they have an hour and a half of work to do before bed. These things are just SOME of the daily roadblocks that Drew lives with.
Caution! We have to keep Drew away from many things so that he doesn't get bacteria stuck in the mucus in his lungs. Some of the bacteria found in pool areas and dirt can be a death wish. Imagine the stress that we live with when Drew wants to dig in the dirt or splash around in a pool with his brothers?
An Exciting Future! What would life be like if Drew could just get up in the morning and take a bite of toast, or play for an extra hour at the end of the day? This is becoming a reality.....WE ARE GETTING CLOSE TO A CURE!!!
In the CF community, there are patients who are in a clinical trial right at this moment taking a pill that is going right to the root of the problem in the cells of the body. It is correcting the defect that is causing the mucus build up! It will take about 4-5 more years for this drug to go through the clinical trials and to eventually be used by some CF patients.
What's the Hold Up! There are so few people with CF and pharmaceutical companies will not invest in these children. You and I are the only people who are making a difference!
One day soon, we will gather to celebrate a cure!
Thank you to all of you who work so hard to keep Drew healthy! Thank you for taking the time to read this message and thank you in advance for golfing for Drew! I promise that in five years, you will be able to say that you were a part of making history.
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