Condition: Caudel Regression Syndrome
City, State: OR
Club: White Mountain Middle School Sparrow Club Service Hours: 318
Date Adopted: 2/01/2011
Amariz's Story:(2.1.11) At 3-years-old, little Amariz is an inspiration to all who have the privilege of meeting her. Amariz was born with a little-known and rare congenital disorder called caudel regression syndrome, sometimes known as sacral agenesis. For Amariz, this means that her spine stopped growing just below her ribcage, leaving her without a tailbone. As a result, Amariz takes growth hormones to help her grow. Because she doesn't have the use of her legs, Amariz usually uses a wheelchair and walker to get around but at home she has no problem moving around just using her hands and arms. In fact, she loves to dance and has even mastered a crowd-pleasing headstand! In addition to caudel regression syndrome, Amariz has endured surgery to correct bilateral club feet, and has another rare condition called total situs inversus, which means that all of her vital organs are reversed from their normal positions. Amariz has a unique life that can be difficult at times, but through it all, this sweet-natured, outgoing, beautiful little girl is full of joy and leaves a lasting impression on all who meet her. Money raised through the Sparrow Club at White Mountain Middle School will be used to help with general living expenses and will help pay for minor home improvements, such as a ramp, which will make the home more wheelchair accessible.