Sophia and Savannah BATTLE Cystic Fibrosis everyday.... It's not something you see when you look at them. On the outside, they look like normal, healthy, happy girls. On the inside, CF is silently filling their lungs with mucus, making it harder to breathe, and its wreaking havoc on their digestive systems. On a daily basis, the girls take between 30-38 pills, nebulize three different medications, and do two-thirty minute chest physiotherapy treatments. It takes getting up early in the morning, and it takes up their playtime at night. When they're sick, its double-time.
They have been taking Kalydeco for four years now, which has opened our lives to new adventures. Where we were once scared of germs, we can now bravely go. While it hasn't been the miracle drug we anticipated, the girls have been healthier than kids with CF who can't take Kalydeco.
We are anxiously awaiting the newest drug, Trikafta, which was approved for ages 12 and up in 2019. Both girls will be able to take it as soon as they turn 12, or it gets approved for ages 6-12, whichever comes first. This drug has proven to be even more effective than Kalydeco, and it corrects the second genetic defect that the girls have.
Taking another medication, while helpful, isn't the end of this war for our girls. We will fight until we have a cure, so they can have as normal of a life as you and me. Without treatments, without handfuls of medication everyday, without the worry of being hospitalized with every cough.
We would love for you to join our Squadron and FIGHT CF with Sophia and Savannah!! Every person who comes to the walk gives the girls a glimmer of hope for the future. Every dollar donated in their honor helps them know that they are cared about and not alone in this fight. You're generosity gives them extra days to enjoy this beautiful life!!!
Thank you from the bottom of our hearts! Bryan, Jackie, Sophia, Savannah & Truman
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Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.