Description
My name is Eve and I have a rare genetic disorder called Dup15q. I am extra special in this rare group because I have 48 chromosomes instead of 46 like most people. As a result of my disorder I am legally blind and am affected by Cortical Vision Impairment. This is a relay issue to the brain. I also have extremely low tone and cannot stand or walk but I work hard everyday to build my tone and bone density. I suffer from global developmental delay so it is harder for me to communicate my needs and learn the same way as other boys and girls. I am most affected by epilepsy. I have Lennox Gastau Syndrome which means my seizures are hard to combat with drugs. I have had seizures since birth and experience anywhere from 1 to 10 seizures per day. My mom and dad are organizing for me to see specialists out of state to try and help me. It is hard for me to travel and sleep safely. I am hoping you can help me aquire this special safety bed so that I may travel and have a safe place to sleep, as insurance will not cover it.
