The story of Cassandra
Cassandra was born a healthy baby girl, it wasn’t until she was about 10 months old that she had her first seizure. It was from there, doctor appointments one after the other that she was delayed and had epilepsy. She couldn’t walk until she was five years old, and to this date she still cannot talk or eat on her own. In 2016 we got a diagnosis that she was living with OCNDS a new rare disease. To date, 160 individuals are living with this syndrome. As a sister, I was devastated at six years old to find out my sister was special needs. However, as I got older I realized it was something to appreciate, no matter how difficult to live the rare life. I am so thankful for an amazing soul in my life whom I prayed for as a little girl.