Miss Amaya - Living with CRS

Hi, my name is Kari and I am the grandmother of Miss Amaya. Amaya was born at 38 weeks with many congenital anomalies. The main diagnosis is Caudal Regression Syndrome. CRS is a developmental abnormality in utero that causes problems with the caudal or lower partition of the spine.  In our case, Amaya was born without legs, small kidneys, and a slightly tethered spinal cord. She also has Bilateral Microtia Atresia. This is where the outer portion of the ears are small and/or malformed and the ear canals are unopened.  Amaya was born with both ears this way. She also has cleft palate and a slightly recessed chin which has now been diagnosed as Pierre Robin Sequence, a couple mild heart defects, and a lot of respiratory issues. She has been in Children’s Hospital in Knoxville, TN since mid-December. She is almost 6 weeks old and has had 2 surgeries. I am raising money for Amaya’s mother and father as they are missing a lot of work to be with her. They are both young and going through unimaginable times. We appreciate anything given and appreciate thoughts and prayers as well.