In the last 18 months we have learned more about the medical field than any of us had ever dreamed about!
We were talking about how last June when Juliet had to have an NG tube for feeding how hard we thought that was going to be, if we had only known then what we do now of how easy that step would be. It’s crazy how we can pick up on facts and procedures when we are so heavily vested in something, that we had never before even had an interest in.
We met a new family today that has been in a very familer (to us) situation, and just meeting and talking to them we had a instant bond, they were talking about things that just a few years ago probably had no idea what 95% of it was. And I just thought to myself on how we talk to people and use all these medical terms now that most people have no idea what they mean and they are now just second nature. Please pray for “Sweet AlexusJo” when you get a moment! And her beautiful family.
When we started this journey we were only aware of 21 people ever having been diagnosed with Vici Syndrome. That number has now grown to around 50, several diagnosed since Juliet. We have also noticed there are similarities to other more common diseases, one being CF (Cystic Fibrosis). A lot of respirotory and pancreatic issues, as well as several of the same treatments. Vici still being such a new and unknown to most in the medical field we feel there will be several more Vici diagnoses in the coming years and we already know of one or two in Nebraska but have not been able to contact the family to this point.
The exciting news is there is starting to become a Vici Family of several other Vici kids and we have begun to share info to help us info our families, doctors, and others about the cares and treatments for our Vici kids.