Ethan was diagnosed with CF at three weeks old. We were shocked and terrified, but!! we finally had an answer for why our tiny newborn had been losing so much weight and was constantly hungry! After he began treatment and was having enzymes with his milk, he FINALLY seemed full and satisfied! It was so amazing! He went from the 9th percentile to the 90th percentile with the help of treatments, medication, and an amazing care team. The picture above shows how much Ethan has grown and is THRIVING as a toddler since he was that tiny newborn who barely fit into his little clothes!
Ethan is now an extremely busy 2 year old who loves robots, vacuums (and designing & building new ones), taking things apart to see how they work, feeding his hummingbirds, bunnies, cleaning the house with mommy, building things with daddy, and playing with his kitties. Somehow he still has time in his busy day to fit in two 20-minute vest sessions and two nebulizer sessions! We usually start each day with the vest and misty-mist (aka his percussion therapy vest and the nebulizer) before breakfast. His second session is usually before dinner (a less-full stomach is better!)
Like so many families, we are patiently waiting for the groundbreaking drug Trikafta to be approved for Ethan's age range. Hopefully sometime in the coming year!!!
Join our team and help us get one step closer to a cure for cystic fibrosis - a rare, genetic, life-shortening disease that makes it difficult to breathe.
With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF, fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled in the last 30 years. Despite this progress, many people with CF do not benefit from existing therapies either because their disease is too advanced or because their specific genetic mutations will not respond. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
We walk in Great Strides for them.
Will you join us?
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
Every dollar makes a difference!! It goes to directly to the CF Foundation's research that provides groundbreaking medication (modulators like Trikafta), new treatments, and studies (like gene therapy!) that could soon result in a cure for Ethan and thousands of others like him!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.