My Great Strides Story
Kristina Handshy
Kristina Handshy
As most of you know by now, our (almost) 10 year old son, Conlee lives with a genetic disease called cystic fibrosis. Many of you have watched his story in real-time and have seen the some of effects of this disease. For those of you who don't know much about what he deals with let me explain a little about his daily life. Conlee takes roughly. 30 pills a day (like it's nothing might I add), he also does at least an hour of chest therapy (vest and nebulizer medications) to break up the thick mucus that his lungs produce, he eats a high calorie/high fat/salty diet to help his body maintain and gain weight which is a chore for him as his appetite does not match his need for so many calories. He sometimes utilizes a feeding tube that he has had for 7 years to help him reach his calorie goals since this can be so difficult for him. Despite what it seems like, Conlee is one of the very lucky ones with this disease as he's eligible and able to take a new "CF modulator" which treats the root cause of CF rather than just the symptoms. There are many people who are not able to utilize this amazing drug due to ineligible mutations or side effects caused by it. While Conlee seems pretty healthy on the outside, please know that it's a fight every single day to keep it that way. Please consider helping us reach our goal so that others can benefit from a similar medication as Conlee and, of course, ultimately a CURE!
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
Comments