The Great Strides Story
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. I walk for them.
Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
The Story of Owen
On Wednesday January 4th, 2023, we got a call that the sweat test Owen had earlier in the day showed he was positive for Cystic Fibrosis.
We barely knew what CF was, but the tone of the doctors voice made us uneasy. We googled CF, which was a mistake so don't ever do that, and we panicked. "We could lose this baby that we've fallen so in love with?" Neither Zach or Sam slept that night with thoughts like these racing through their minds.
The CF clinic at the Norfolk CHKD gave us all the information we could need and more about what to expect. They put our minds at ease with each appointment.
Owen is 17 months old now and has been gaining weight steadily, participates in daily cup airway clearance therapy, albuterol treatments as needed (nebulized and through and inhaler), takes enzymes before every meal containing fat, takes Kalydeco twice a day, and been hospitalized once (December 11th, 2023 - December 22nd, 2023).
Not only does Owen have CF, he also has a ventricular septal defect, a dysplastic kidney, torticollis, and a clubbed foot. He had surgery on his foot on January 10th, 2023, had a number of casts placed afterward, wore boots and a bar to bed, and now has an AFO he wears during the day. He will have another surgery on his foot when he is 20 months old.
The first year of Owen's life has been an eventful one, but he doesn't let any of it get to him. This kid can always find a reason to smile (especially when he hears the Bluey Theme Song, or I Like to Move It from Madagascar). He is spunky, sassy, and determined like no other! He may not know it yet, but his parents will fight for the rest of their lives until CF stands for Cure Found.
You can support Owen!
By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.
Our Current Fundraisers
- Truth or Dare for Owen Z Erhard ($1 to ask me a question, $5 to give me a dare - videos posted daily)
- https://www.facebook.com/profile.php?id=100089982047562
- Send a message on the facebook page with your truth or dare after you've made your donation
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.