In 2014 my son was referred to a geneticist who thought for sure Wilson’s Disease was a match for his symptoms. I of course was like “What disease?” And immediately went home to Google it and research as much about this disease I had never heard of before.
What I found, much like any medical internet search was NOT good, it was NOT reassuring, I was downright scared to death for my sons’ future. Yet we had to sit and wait for I don’t remember how long it actually was to get the test results back, but it felt like an eternity. It definitely was not fast in any event. I thought why aren’t they doing a faster test? Oh well that would be biopsying the liver, that’s not an easy test. So we waited & we waited & we waited some more. Eventually we got the news he was negative and we could breathe again, but realized there are too many who don’t get the great news we got.
My husband and I vowed to help raise awareness of this disease, but we weren’t sure where to start, so when the Big Wow came across my path it was an easy decision to jump on board and host this event in our city.
People are suffering with this and many even going around undiagnosed because it’s so un-publicized that even most of my son’s physicians had never even heard of it. I found this was often the case via a Wilson’s Disease support group which I had joined while waiting for results, doctors just don’t know about it. So it is our mission to bring awareness to this disease and raise funds for the research to find a cure, get it diagnosed early or at the very least find new medications to help patients along in their journey with this disease and to help their families in understanding and providing the support on a personal level.
