In Memory of Bryan McKinnon

January 22, 2017 was a day that changed our lives forever.  My husband of 46 years Bryan, father of our devoted daughter Jamie, lost his yearlong battle with a rare disease called Amyloidosis AL.  You probably have never heard of this disease.  Neither had we. Amyloidosis is a rare disease that occurs when a substance called amyloid builds up in your organs. Amyloid is an abnormal protein that is usually produced in your bone marrow and can be deposited in any tissue or organ. In Bryan's case, it was in his heart, kidney, and GI track and later spread to his liver.

When the diagnosis was made we were shocked to learn that there was no known cure, and no approved treatment from the FDA. The feeling of desperation was overwhelming.  Where could we go to save our Bryan? He was in such bad shape, but never complained, and we never let hope fade, not for one day. He knew that together we would do everything possible, and he had great faith that a doctor would be found to lead the way to a cure.  Things got difficult at home as the disease progressed rapidly, so daughter Jamie moved back in with us to be there for her dad and to help me.  Her presence was a gift from God for her dad and no doubt gave him strength to fight. 
 
Every day we made calls all over the country looking for answers, trying to find some direction.  At last we were told about a doctor at Stanford University Hospital, Dr. Michaela Liedtke, doing groundbreaking research into the disease, one of the only places in America where some sort of study was taking place. This was the start of a many times repeated long journey from our home in Southern California in the car with Bryan, so sick he could barely stand a ten mile drive let alone a 400 mile trip to Stanford Hospital. When driving became to hard we started to fly, but that was even more difficult boarding airplanes weekly.  But he did it, over and over, and along the way Bryan became very close to Dr. Liedtke, trusting her, believing in her.  Bryan entered a clinical trial under Dr. Liedtke for an experimental drug and was making some progress, but in the end it was just not enough. 

Bryan died on a Sunday, peacefully, at home with Jamie and I, and his two dogs at his bedside.  His wish was to help others suffering from this rare disease by funding research for a treatment and a cure with Dr. Liedtke at Stanford Hospital.   We humbly ask for your donations with all funds going directly to the Stanford Amyloidosis Research program. 

 
With love and appreciation,
 
Sharon and Jamie McKinnon