Tanya Darrow

Hello World! We are the Darrow Family and Gavin is our firstborn son. We’ve been participating in Great Strides for over a decade!

Where to start...let’s see: our family battle with CF began just two weeks after Gavin was born in the Spring/Summer of 2010. He had a positive screen and needed additional testing (fun fact: North Carolina had JUST approved adding the cystic fibrosis screen to the Newborn Screening tests in 2009). Mark and I had no idea we were carriers. He comes from a VERY large family and nobody had ever had or even really heard of the disease. I vaguely remembered it from a slide on a pediatric lecture in PA school. It was taught as a disease of childhood-fatal for most before high school/ it was also rare, and unless we specialized we probably wouldn’t see it. It was surreal that our child had it.  A million thoughts go through your head when you get a diagnosis like this. All of the "what-if's" pop in and cloud any hopes you have for your child. I was fearful to hope, but I prayed.

We were referred by his primary care doctor, and we traveled to Duke Children's and sat in a small, windowless room for several hours while Gavin's sweat was collected. I held him while he slept, fed him when he needed it, and just sat-thinking. This perfect little boy-surely nothing is wrong, right? With two mutations-it really wasn’t likely the sweat chloride test iwould be negative, but we went home hoping and waited for the results.  The call came.  "Well, he's positive, let's get you in with the pulmonary team." Even as I write this, the tears well up.


Here’s what I didn’t know-in the 3 years since I finished PA school and even decades before that-The Cystic Fibrosis Foundation was working. It was working to find a cure. The pipeline of research was expanding. New treatments were already in the works early identification and initiation of treatments was found to significantly improve outcomes.


Today, Gavin is a happy and healthy teenager. We are in that time of parenting a teen who is finding himself. Sure, he has vest therapy, medications, and we still make sure we’re at his appointments, regularly. He’s never had a feeding tube. His last hospitalization was just before he started Kindergarten! He runs cross country, sings (He DID make NC Middle School Honors Chorus), acts in our local community theater, and has been able to attend dances, away camp, and all kinds of events!

He still takes more medicine than any person should have to take to live and breathe. There isn’t a cure. Research requires money. That money moves the needle of advancement. Great Strides is one event of many (we also participate in Xtreme Hike in the fall). Nobody in this community is stopping until CF stands for “Cure Found!”

Thank you in advance for your support. If you can’t give, now, consider participating in a CF Great Strides Walk or other event near you! Also, we will be sending out information later this year about Xtreme Hike!

The Darrow Family