Ameira (Jarcho-Levin Syndrome)

Hi My name is Ameira Rios my family and friends call me Mimi. I am 9 years old and I was born with Jarcho-levin Syndrome it is a rare genetic disorder. I have severe malformations of my spinal column and ribs. I have a short thorax, severe scoliosis and kyphosis. My spinal defects cause me to have a short neck, limited neck motion, and a small body trunk. My mom explains that this is why I am short and have a bubble belly. Before my mom had me they told her I might not live thru the birth and if I did I would be paralyzed. Once I was born they told her I would not live past the age of 1 and would probably never leave the hospital but I proved them all wrong. I am lucky to be able to celebrate 9 years of life and I was able to see other people with my condition and that look similar to me and I really want to meet them. I want to learn more about our condition. They have conventions where they meet every year in Florida or Puerto Rico and I really want to attend one of them. Due to certain circumstances my mom can not afford to pay for us to go on her own and she was advised by a friend about this site and decided to take a chance at it and see if she can make my wish come true. Every donation will help her to make this happen. Thank you all in advance.