Erin Williams

My Great Strides Story

There is currently no cure for cystic fibrosis. For 13 years we have been participating in events and putting on events to help the thousands of people impacted by CF.

Our story began in September of 2010 in Midland, Texas. Our first son, Jackson, was born and we were over the moon. At our first newborn check, we were asked to come back for more blood work. One of his numbers was high and although he was thriving and gaining weight like a healthy baby, they wanted to make sure everything was okay. It wasn’t. After two sweat tests and a trip to Dallas Children’s hospital it was confirmed that he has CF and we had no idea what that meant. The doctor told us “not to google CF” because what we would read was no longer the relevant. Researchers were on the brink of some incredible treatments that would change lives. We quickly learned what it meant to care for a child with Cystic Fibrosis, i.e., the multiple medicines, nebulizers, Vest treatments, germ precautions, long check-ups every three months and of course insurance.

Six years later, Lincoln was born. He had his own set of health issues, but we breathed a sigh of relief when his newborn screen came back negative for CF. However, after multiple infections and failing to thrive, we opted to retest. The sweat test was positive and when the screening came back the second time, it showed the same mutations as Jackson…DF508 and a deletion of exon 4. Although an extremely rare combination (CF and Down Syndrome), since being diagnosed and starting the proper medications, Lincoln slowly began to thrive. He’s 7 years old now and if you didn’t know his story, you’d have no idea the struggle he went through early on.

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.

We will work Until It's Done!

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.

Blessings,

The Williams Family