Shelly MacIntosh

A snippet of our CF story….​​​

It’s hard to believe that it’s been 22 years since our first Great Strides walk just days after Taylor was diagnosed with cystic fibrosis at the age of 12!  The year was 2002 and right after being told he had tested positive for this life threatening disease, we were told not to look on the internet for information.  We had so much to learn, so of course we didn’t listen and we looked.  What we read was terrifying.  Among many statistics, one stood out to us more than anything…the median age of death for someone with CF was 38 years old! 

Taylor was immediately admitted to the hospital and underwent treatment for an aggressive lung infection that he’d been fighting for years prior to the diagnosis. He began a regimen of up to 30 pills a day along with several hours of chest physical therapy to combat the effects of the thick mucous that clogged his vital organs. In the years following, he underwent rounds of toxic, but necessary, antibiotics…oral, inhaled and IV…in an effort to keep his lungs as clear as possible by keeping the bacteria levels low, although they would never be truly gone. All that changed in 2012 when Taylor became one of the first cystic fibrosis patients to start a brand new drug therapy that would immeasurably improve his world. In the months, and now years, since starting Kalydeco, Taylor’s health improved dramatically and those chronic lung infections that had plagued him forever were no longer showing up in his mucous samples. In 2022, he began taking a newer and better version of the same type of medication and things got even better from there.  Taylor has been able to gain weight and fight lung infections without much medical intervention, and has even had Covid several times without incident. 

Because of the Cystic Fibrosis Foundation, the median age of death for a person with CF is now around 50 years of age.  However, in doing some recent research, I read the following….
“Data also show that of the deaths reported in the Registry in 2021, known as the median age of death, half occurred before the age of 34 — meaning too many people with CF miss the opportunity to finish school, begin careers, start families, and reach other milestones.”  (CFF.org)

Half of all CF related deaths occur before 34 years of age! Taylor is 34 years old! Even though he is doing better than ever, he depends on medications to keep him that way.  He is NOT CURED of CF! He is newly married to an amazing woman and plans to start a family.  He has a career and a full, busy life.  We need to add more years and that’s why we participate in the CFF Great Strides walk every Spring to help raise the much needed funds for researchers who work passionately to find a cure for all those who suffer this disease.

Thank you!  And please consider walking with us and/or donating to our team!

**There is currently no cure for cystic fibrosis. By participating in Great Strides, I am helping to end this disease for thousands of people impacted by CF.

***Cystic fibrosis affects the lungs, pancreas, and other organs. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues.  

****The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.

Your support makes a difference.

By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found.