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.
https://fightcf.cff.org/site/TR/GreatStrides/130VirginiaRichmond?px=5095464&pg=personal&fr...
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 a year 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, has salt in three bottles daily, and been hospitalized once (December 11th, 2023 - TBD).
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, and now wears boots and a bar to bed as well an AFO during the day. It sounds like he may need another surgery in a few months.
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. https://fightcf.cff.org/site/TR/GreatStrides/130VirginiaRichmond?px=5095464&pg=personal&fr...