Coming out of our visit to the Rochester Mayo Clinic, they recommended we head south to the Jacksonville location to get the rest of the answers we were looking for.
Although we were more than happy to follow a recommendation to go to the beach, there was a long waiting list to see the specialist group, and it was closed due to the volume of interest.
Despite this news, the Rochester team assured us they would find a way to get her in. A few weeks ago, we found out she not only made it on the list, but somehow got priority for an appointment with the Medical Director of Diagnostic Medicine and Research partner in connective tissue genomics.
Sidebar – We were fascinated to learn the doctor was a military combat trauma specialist with enhanced focus in Biodefense, Analysis, Biochemistry, Microbiology and medical AI (Artificial Intelligence). So…. In short, the smartest guy in the room! LOL
After meeting the guy, it was fascinating to watch how quickly he processed verbal and non-verbal communication. He seemed like the person who finishes playing chess before you make your first move.
If you have to travel for medical reasons, we highly recommend going some place sunny with lots of sand, lol. As always, we find ways to make a medical trip feel more like a vacation. We’re staying at the Margaritaville Beach Hotel, rented a Jeep Wrangler Sahara (with retractable top) and spent our free time investigating the local sites. 
Anyway, it’s been a great trip because we’re actually leaving with definitive answers and validation! Becky was also asked to give her permission (granted…) to participate in clinical research for her rare diagnosis to help others with similar undiagnosed conditions. We still have one last piece of the medical mystery to solve… and now with the help of the Mayo Clinic and NIH, we’re hoping to learn what it will take to make sure Becky can live her best life!
BTW – We think the Jacksonville Mayo Clinic campus is one of the most beautiful medical facilities we have ever visited! 
