chronic organ failure

‘My daughter started bawling and wouldn’t let go of me. ‘All you do is sleep!’ My friends would say, ‘You’re a single mom. It’s normal to be tired.’ I knew something was wrong.’

‘It was happening at home, at work, at the grocery store. When I got home, I would give my daughter a snack and immediately go to sleep. Every time I got up to use the restroom, my heart rate would shoot up. I started teaching my 8-year-old how to call 911 if I couldn’t make it to the phone.”

‘I was at work when I got the call from my doctor. Time stopped moving. The only part I remember is him telling me there are no known cures. I was literally watching myself decay.’

“I was terrified my boyfriend would leave me because it made me look different, or because it was just too much for him. I felt him distancing himself from me out of fear; he kept telling me how scared he was for me, and how he didn’t understand how this could have happened to me so quickly.”

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