My Xtreme Hike Story

I don't truly believe it was divine intervention, but I've never written my Cystic Fibrosis annual appeal later than May. As advances in Cystic Fibrosis treatment have increased our children's health, it gets more difficult to ask for continued funds. Then the wake up of a lifetime comes along and reminds you that the fight isn't over.

Logan continues to do extremely well on the medication Trikafta that changes the defect that causes Cystic Fibrosis to miraculously make it to where he has little effects from the mutated gene. Madison's story is not quite as positive, but a huge testament to what the Foundation has accomplished in a short period of time. Since taking Trikafta Madison has been relatively healthy. Unfortunately, the damage that she sustained to her lungs in

the years before more advanced medication, has left her with negative effects. In the last couple of years she has experienced hemoptysis, coughing up blood, due to infection in the damaged portion of her lung. It has been a nuisance until this month when she started coughing up blood and it didn't stop. She was out of town for work when she started coughing up blood, calling 911 to take her to the hospital. From there, she was airlifted to university of Iowa hospital where she underwent an emergency procedure to stop the bleeding in an artery in her lung. After a scary week, she returned home, a little humbled by how quickly life can change. It was a reminder to all of us that cystic fibrosis will always be a part of our lives and we still need to fight for the ultimate cure; that all individuals with CF live a long healthy life without the nuisance or the trauma of

what life with CF brings.

Being in Iowa was interesting because the doctor there worked directly in the creation of Trikafta. Them in collaboration with Vertex and funded in part by the Cystic Fibrosis Foundation have changed individual's lives with CF. He told me they were close to the next step and I said "oh yeah, the once a day medication, instead of twice a day, which is in final stages of clinical trials". He said "no, gene mutation so we no longer have CF"!

You have made that dream a reality. Please help us continue to the end goal of irradicating Cystic Fibrosis. I'm hiking the Cystic Fibrosis extreme hike again this fall. Please contribute to the link below, join me in the hike or send continued prayers. Everything is much appreciated. Let's make CF stand for CURE FOUND!

Donate online or send checks made out to CFF
Ryan and Alicia Luechtefeld
1450 Gambier Terrace Ct
O'Fallon, IL 62269