My Story

This story isn’t really about me, but rather her. My daughter Elise Hope Maria was born on March 9, 2021. She weighed 6 pounds 6 ounces, had locks upon locks of dark curly black hair, and was one in a million. Elise was born with an ultra rare disease called KCNT1 related epilepsy. The doctors told us that there were only 300 documented cases in the world, which means she was more like 1 in 20 million. KCNT1 related epilepsy took Elise’s life on March 16, 2021.

Her death was completely unexpected. No, we did not see it coming from the ultrasounds. No, prenatal testing would not have helped us. No genetic panel includes KCNT1 mutations since they are so incredibly rare. No, it was not visible from her physical examination upon birth. Yes, Elise had clubfoot, but clubfoot is not associated with KCNT1 related epilepsy, and it is one of the most common birth defects, which can be completely corrected. Just look at her. Can you believe she is a baby that didn’t make it? The lady at Walgreens who printed this picture clearly couldn’t. As she gave me the picture, she asked me how old my baby was now. I couldn’t help it. My throat dried up, and my eyes immediately welled up with tears. I stared at her and somehow the words, “she passed away” left my mouth. Then, the silence came. Walgreens lady, if you’re reading this, I’m sorry to have hit you with that reality check that broke our pleasant small talk.

Before Elise started having seizures, I had an amazing life story. I didn’t know it at the time, but man, I had it made!  All the boxes were checked. Grow up in a loving and caring family. Check. Get the job you always dreamed of. Check. Marry the love of your life. Check. Get pregnant easily exactly when you planned. Check.  Marvel at life again through the eyes of your first child and revel in how unbelievably lucky you are. Check. Have your second child be born and die a week later of an untreatable illness that no one has heard of before. Nope. That one did not fit into this great life story I had. Yet, I need it too. I firmly believe that “all sorrows can be borne if you put them into a story or tell a story about them.” The sorrow of losing Elise consumed me, so I need to write this story, this blog.