My Xtreme Hike Story
17 years ago, on June 30th we were given the worst news of our life, Cystic Fibrosis. The only thing we heard was that our 2 month-old daughter had an average life expectancy of 35 years old. I was only 26 at the time. Ryan and I looked at each other and said we wouldn’t accept that, and we never looked back. Thankfully, we were not the only ones with that same mindset. The Cystic Fibrosis Foundation had a goal…make CF stand for Cure Found! 17 years later and this team of family, friends, medical staff and the foundation has not waivered on that goal. Today, I received a phone call from one of the most important people in our lives that few family members and friends know. One day before the anniversary of Madison’s diagnosis, Dr. Blakeslee Noyse called to deliver a different kind of news. In the world of CF, when the Dr calls directly, historically it is not good. Madison had a sweat test on Monday as part of research to look at the effectiveness of the new CF medication. The diagnostic procedure is done to determine the amount of sodium chloride in ones’ sweat to diagnose Cystic Fibrosis. A person with CF has a value over 60. Seventeen years ago, Madison’s value was in the 90s. Dr. Noyse went on to explain that individuals below 30 do not have CF. He said patients who had been on the medication Trikafta, that Madison started taking 18 months ago, have been having miracle values in the 40s, which incredibly puts them in a nonconclusive area. He then said, “I just had to call you directly to tell you Madison’s value was 20!!!!!!!” Meaning, based on this diagnostic indicator, Madison does not have CF! Insert goose bumps! I write to you on the day before the anniversary of our first child being diagnosed with a life shortening, debilitating genetic disease, to tell you that miracles do happen when you believe the fight can be won! I don’t think Madison can appreciate the enormity of the gift she has been given, but the person who can is Dr. Noyse. He has spent a good portion of his lifetime trying to prolong the life of so many young patients, yet in the end the disease won numerous times. To see his face looking at Madison in clinic and hearing the joy in his voice as he told me what her test showed is indescribable.
Logan’s journey with Trikafta started just two weeks ago. We are extremely excited the FDA approved Trikafta for 6–12-year-olds, and we look forward to Logan’s health improvements. In just 3 days of taking TriKafta, his cough is almost completely eliminated.
The fight is not done for many, and TriKafta is not considered a “cure” since medication is needed for the rest of their lives. The funds raised by our team have gone directly towards developing this medication, and we are seeing the firsthand results. As we hike 30.1 miles to support the Cystic Fibrosis Foundation, our very generous friends and family members will be close to our hearts. Thank you for your continued support to help all individuals with Cystic Fibrosis have more tomorrows.
Donate online or send checks made out to CFF
Ryan and Alicia Luechtefeld
1450 Gambier Terrace Ct
O’Fallon, IL 62269