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Our niece and nephew, Vida and Soren, were born with Cystic Fibrosis (an inherited chronic disease that affects their lungs). Both continue to doctor at the American Family Children’s Hospital in Madison and have regular checkups. They receive chest therapy and nebulizer treatments, take inhalers and nasal sprays, get chest x-rays, EKGs, and throat cultures and have blood drawn on a regular basis. Vida had been taking the new drug Kalydeco™ since it was approved by the FDA in May of 2015 and recently switched over to Trikafta. It is somewhat a “miracle drug” and the first of its kind to treat the underlying cause of CF and not just the symptoms. Soren has also been taking Kalydeco as part of a clinical trial since he turned one. In November, Vida had a bit of a setback when she cultured pseudomonas and therefore had to add a TOBI nebulizer two times a day for 20 minutes each to her daily treatments.
Vida is 11 and is in the fifth grade. She loves riding horse, Chipotle, basketball, swimming, and hanging out with her sister (Devan is a carrier of CF but does not have the disease). Soren turns 6 in April and loves the grinch, Jurassic World, King Kong vs Godzilla, and chocolate milk.
Throughout the last ten years, team “Chute for a Cure” has raised more than $87,000 for the CFF. We are still working toward, praying for, and believing that a cure will be found. All donations to the Cystic Fibrosis Foundation will help add tomorrows to the lives of adults and children living with this disease. Along with your support, the CFF, our doctors, and God, we know that Vida and Soren will be cured. We thank you so much for your love, prayers, kind words, and support.
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