Hays Family Cystic Fibrosis Battle: Dillian(27) and Jason Jr(21) who both live with Cystic Fibrosis
10/03/2026:
First off I want to thank everyone for the prayers, kind words and reaching out, it means a lot and helps us keep going!
Both, Dillian and JJ have been admitted to hospitals, 6,8, and 9 hours from home with hundreds of doctors/hospital stays over a 27 year span. As of May 2025, Dillian took a turn for the worse after starting and having a extreme allergic reaction from a new CF modulator which has caused multiple organ damage mainly his cardiac and respiratory symptoms, with compromised lungs already due to his CF(doctors described his Cat Scans as "a broke glass jar splattered all over his lungs and around his heart". At this point we've spent well into the hundreds of thousands of dollars trying to save Dillians lungs, because he does not qualify for a transplant at this current moment and have exhausted all local resources, in 3 surrounding states. We have been trying to see the specialty Cystic Fibrosis and infectious disease team in Denver, 22 hours straight drive from our house, since September 2025, and Dillian has finally been accepted and begins care the week of October 18th, this comes with a lot of extra cost and traveling we are reaching out asking for help with funding to include: Hotel, flights, food, gas, and medical @20% co-pays, do to being out of network, and out of state, but this is our only option, currently we are in Orlando admitted for continuous of care to keep him stable until making the trip, plus we still have doctors in Orlando, and Gainesville, while still getting care in Denver. If you can help in any way we would greatly appreciate it, this would take a great strain off the family, so we can take off work to be together while we face this challenging time and care for both boys multiple states apart.
Jason Jr.(JJ), is currently getting care in Orlando(CF) and Gainesville (multiple doctors). As many of you may or may not know, JJ was born not only with Cystic Fibrosis but type 1 and CFRD diabetes with a normal glucose above 1000(most people would have already been dead) most days, and lived 50% of his childhood life in hospitals, with his most current hospital stay 2 months ago, multiple ER visits, and countless doctors visits(all over Florida) procedures, testing and the list goes on, he now mainly treats at home, by IV medicine when sick and gets admitted a few times per years. He currently isnt doing the greatest with health and doesn't feel well most days but he still trys to run his own lawn care business, sick or not, we know its not ideal but its his passion.
We will continue to update along our journey. I will add to this post by current dates.