When Susan’s 19-year-old son, Chad, died in September 2020 during the pandemic, it was an extremely isolating time, but she and her family were also completely exposed. Chad was a healthy, young athlete who died from an extremely rare neurological disease called Weston-Hurst syndrome. This horrific disease is rapidly progressive and most often fatal as it attacks the central nervous system. Its specific cause remains unknown, but it is triggered by a viral infection. In this case, Chad contracted COVID while at college.
Now, this family was not only mourning the death of their beloved son, but they also had to deal with the fact that their son’s death was a news story. If you Google Chad’s full name, you will find multiple national news articles. In Time magazine, Chad became the face of North Carolina when they had an article about ‘The Fifty Faces of COVID’ which highlighted a person from each state who had died of COVID or its complications.
You might think that this publicity would have brought Susan love and support from others, but that was far from the case. As Susan mourned her son, others would talk to her about mask mandates. How would anyone find this comforting? Susan found herself turning inward to her family and isolating herself even more. Fortunately, the tremendous love between Susan and her husband has helped them work through the pain, but it is heartbreaking that others have not been there for them.
When Susan wrote to me about sharing Chad’s story, she said she wanted me to think about if I really wanted to have her on because Chad had COVID. Susan wrote, ‘If it is too much of a hot topic, I understand.’ I assured her that her son’s death was not something to be avoided. There are not some stories that are ok to tell and others that are not. These are the stories of our precious children and the manners of their deaths do not change anything. Chad was a smart, amazing kid who always had a basketball in his hand. He was the best friend to many young people and every member of his immediate family. That is the story of Chad that everyone should know and one we are honored to tell.
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