Eighteen-year-old Anemarie is a miracle of a young lady with a spitfire personality to match. She faces every day with a smile and is determined to make the best of every situation. Anemarie is quite a fashion “diva” and just loves beautiful clothes. She collects Beanie Babies and pocketbooks as well as fashions. Anemarie’s also very good at woodworking and just loves to be outside.
At nine months old, Anemarie was diagnosed with a rare chromosomal disorder called Trisomy 9 that very little is known about. This disorder can cause many different types of dysmorphisms in the skull, nervous system, heart, kidneys and musculoskeletal system; it can also cause developmental delays. At eighteen, Anemarie is very small for her age though she was put on a growth hormone that accelerated her spinal growth and caused scoliosis, or a curvature of the spine. Anemarie has endured 4 surgeries on her spine in order to insert rods and to fuse her vertebrae from her neck down to just above her pelvic bone. After her second surgery, she was paralyzed for a few months and had to wear a stabilizing “halo” for six months. She is soon due to undergo surgery to remove the hardware in her spine. Anemarie has many physical limitations, cannot talk and is in and out of the hospital frequently.
Anemarie was surprised when she got home from school to find a brand new pool being set up in her backyard! Soon, she’ll have her very own beach and she’ll be able to splash as much as she wants.