My Story

Hi! My name is Charlie and I grew up in Brooklyn, New York. My mom and I visited our neighborhood toy store to pick up some things for my sister, Frances’s first birthday party. My mom bought birthday candles and balloons, and I picked out a froggie stuffed animal that caught my eye. That afternoon, as we welcomed Frances’s infant friends into our apartment, I couldn’t believe how active they all were. Some could take little steps and others could already say a word or two. I wondered why Frances was different. Shortly after, she was diagnosed with a rare genetic illness called Niemann-Pick type A. The disease was terminal and my family was informed that she would only live another year before dying due to an enlarged spleen.

Over the next 14 months, we watched Sesame Street and music videos on YouTube, played with her green froggie, which was her favorite, read books before bed like Goodnight moon, and even listened to a green frog themed music box. After she passed, processing her death didn’t become any easier. I was embarrassed to talk to others about what I was going through — even with my closest friends, my family, or a grief counselor that my sister and I met with briefly. Months of blocking out memories and not being vulnerable enough to talk through my feelings took its toll, as I eventually found myself distanced from friends and regularly falling behind on schoolwork.

While it was difficult for me to process and admit what had happened, having now reflected and spoken with others, I know that many share a similar response. I wish that my younger self understood the importance of emotional vulnerability and had someone who they felt comfortable talking to who had been through a similar experience. Through this organization, I hope that others struggling with the death of a sibling or a loved one will feel comfortable either reaching out to me personally or sharing their experience anonymously. We’ll get through this together. 💚🐸