Our daughter Chloe was born in New Haven, CT in July 2018. As a baby, she met all her developmental milestones and was a healthy child. She would laugh, play, speed down a slide, and dance with her big sister. She had started to learn how to go on a balance bike and had fun coloring, painting, and learning her ABC’s. She would smile her big smile and say ‘I love you’. Shortly after her third birthday, Chloe started experiencing challenges with her speech and fine and gross motor skills. Slowly, she was no longer able to do things she could do in the past..

 

Chloe was diagnosed with juvenile Tay Sachs when she was four years old. Tay Sachs is a rare genetic  terminal illness that affects the brain and nerve function. While she suffered from many symptoms of her illness, Chloe continued to love music and enjoy the company of her loving friends and teachers. She passed away in 2025 at the age  6. Her life and memory will forever be a reminder of community love and support.

 

Chloe’s story inspires us to advocate for support to advance understanding and action around rare illnesses through legislation, education and community-based programming that center around medically-fragile children and their families.