Welcome to Luke's Force!
Luke is currently in his second year away at college! Before Luke began taking the miracle drug triple-corrector Trikafta we had resigned ourselves to keep Luke close to home because his health was so precarious. But since he has been doing so well, not one unscheduled clinic visit or hospital stay in the past few years, Luke is studying at Christopher Newport University in Newport News!
Luke has handled the adulting of being responsible for his pharmacy refills and doctor appointments very well (and I daresay he has gained more appreciation of what his Mom did for him so many years). :) In addition to taking the Trikafta pills, Luke still has to perform two treatments a day with his pneumatic vest and three nebulized medicines.
Luke is on the CNU Ultimate Frisbee team, and is enjoying hanging out with his teammates and travelling to tournaments. He must drag his heavy pneumatic vest and refrigerated medicines on every trip, and he says his friends and teammates are supportive of his treatment regime.
In another amazing opportunity in which we never thought he would be able to participate, Luke is planning a study abroad trip to Tokyo this summer! His parents are quite nervous, thinking of all the difficulties involved in getting his treatment hardware (vest, nebulizer) and all his prescriptions (many needing refrigeration) on that long trip, but Luke is incredibly excited! He will be overseas for three weeks in July.
None of this happy story would have been possible without the Cystic Fibrosis Foundation, and all the people who have contributed to the CFF over the years, for CFF's work made the development of Trikafta possible (drug companies would not have developed this drug on their own, as there are relatively few people with CF compared to heart disease, etc).
So what's next? The most heartbreaking thing about this miracle drug Trikafta is that it doesn't help the 10% of the CF population that doesn't have the most common delta-508 mutation. These poor folks have had to watch the jubilations of those for whom a corrector has been made available, and wonder if they will receive help before their lungs are too far gone. CFF has committed to helping those last 10%.
In addition, CFF is continuing to investigate ways to not only patch the problem by taking a drug daily, but to cure the problem. Although Luke is doing better than we'd ever hoped, his life still revolves around his disease, and he deals with more doctors and prescriptions than any young person should.
We are confident any support to CFF will be used as well as the past support has been, and will result in more miracles for those born with this genetic disease.
The Charlottesville Great Strides walk will be held on Saturday, May 13, 10am at Riverview Park. Hope local folks can join us!
Thank you so much!
Mark and Debbie