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I am Sabrina Johnson

a family member of someone we've lost to ALS

Illinois


ALS, for being only three letters, changes everyone’s lives forever. While people who are diagnosed know they have a terminal disease, the people they love are diagnosed with a heartache for a lifetime.

Growing up, my dad was my best friend. He was the world’s greatest cook, he took the longest to get ready in the morning, he loved to have the last word in an argument, and he was the world’s greatest father. He was my “Ton” as I loved to call him. November 2016 changed our lives forever when the four of us (my mom, dad, brother and myself) walked into a doctor’s office to hear what we all knew in our hearts … he had ALS. I’ll never forget getting home and crying in the bathtub as I read that people with ALS typically live for five years after diagnosis. I didn’t even get five years. My son loved his Papa and after a miscarriage and infertility issues, I found out I was having another son seven months after my dad’s diagnosis. I was extremely happy and extremely upset all at the same time. My second son wasn’t going to know his Papa like my older son. Would he be there to meet him? Would I say goodbye to my dad while pregnant? My dad fought hard and was able to meet his second grandson before passing away two weeks later. People with ALS are the strongest fighters I have ever come across. ALS, for being only three letters, changes everyone’s lives forever. While people who are diagnosed know they have a terminal disease, the people they love are diagnosed with a heartache for a lifetime.


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