Marissa Schain

I was born in Brooklyn, NY in 1989. After my mother found me blue in my crib, my parents rushed me to the hospital. I was considered a SIDS survivor and I was diagnosed with CCHS shortly after. I was trached and I remained in the hospital for 2 months. I became ventilator-dependent at night until I was 18 years old. After graduating high school, I had phrenic nerve pacers implanted, which completely changed my life. I had my trache removed and I started college as a new person. Today I live on my own, I am studying to be a nurse, and I travel internationally. I am independent, adventurous, and I enjoy meeting CCHS families from around the world and I’m planning to come to Israel.