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.

The first time I heard about Wilson’s Disease was in November 2016. My brother, Matthew, had been admitted to the hospital after results processed from routine bloodwork showed dangerously elevated liver enzymes as well as a high blood alcohol level (despite him not having a drink since the evening prior). After further testing, the doctors first mentioned Wilson’s Disease, and at this time Matthew mentioned having tested positive as a WD carrier on a genetic test he and my sister in law had a couple of years prior. Even with this information, the hospital staff treated him for alcoholic cirrhosis. His liver and pancreas were significantly inflamed and he was given steroids to take the swelling down, but the inflammation continued and the results of his follow-up blood test were even worse than the first. He was admitted to Georgetown University Hospital, where we were lucky enough to come across a doctor more familiar with Wilson’s Disease, he took special interest in Matthew and was able to get him placed on transplant list for a new liver. My brother was at the top of the list for the entire region- it wasn’t long before they found him a match. Unfortunately, only about 20 minutes after we got the call, the doctors informed us that they had found an infection, and would not be able to continue with the transplant until it was cleared. This infection led to more, and his health deteriorated quickly, he was put on a ventilator, and was requiring blood pressors in order to keep his blood pressure up. In just a few short weeks, my brother went from a happy healthy 32 year old to fighting for his life. His body became too weak to fight the infections, and too unstable for any invasive procedures. He passed away early in the morning on December 26, 2016.