Every day a piece of my functionality dies, every day I know it’s one less day I’ll see my children, every day I know it’s one less day I’ll be able to tell my wife I love her. Despite this I have never given up and will never give up.
I was diagnosed February of 2017. At age, 33. A devoted dad to Garrett and Hunter, a loving husband, a loyal friend, a dedicated employee, an ECU pirate thru and thru.
Unfortunately, ALS is not an uncommon disease to my family – I am one of those with familial ALS. My father felt the symptoms of ALS 25+ years ago. For too long, doctors had no idea what was wrong. He underwent test after test before ultimately being told he had ALS and lived one month after diagnosis. I was 13.
I fight hard every day to be present and overcome the obstacles of ALS. As a family we are fighting hard with many others to end this awful disease. Defeat ALS is and will be my legacy. For me, for my father, for my boys, and for everyone else who has had to know what we are going through.
I have previously participated in a drug trial at Duke and I am now enrolled another trial focused on my SOD1 gene. I spend countless hours researching trials, researching protocols, and enduring treatments. I am not giving up and my family is not giving up until a CURE is found.
You see, I know that ALS is not incurable. It’s just underfunded and requires more resources. So, I’m going to get those resources. Help bring about that cure. I have not given up yet. And I don’t plan to start now.