Jordan's Pectus Carinatum Brace

Our 12-year-old son is an amazing kid. I know many parents talk about how their child is spectacular, but this child is on another level. He was diagnosed with pectus carinatium at the age of 10. This is a deformity of the chest characterized by a protrusion of the sternum and ribs. He met with a specialist at the age of 10 to find out what he could do to fix his chest. They informed us that he would have to come back at the age of 12 to get measured for a special brace that would fix his sternum and rib cage. For the past two years, he has sprouted up almost 7 inches and his chest has noticeably gotten larger and the doctors said his is one of the most severe they have seen. It is now a time sensitive situation because his chest is hardening and if it gets too hard the only alternative way to fix this will be a major surgery. The attention created by his diagnosis would give most people a feeling of self-consciousness, but he takes it in stride and even results to making jokes about it. We recently found out his brace would cost almost $5000.00 plus monthly trips across the State of Texas to the specialist in Plano to adjust the computerized pressure monitoring system in the brace. Unfortunately, our wonderful insurance (Aetna) has decided that his condition is cosmetic and is not worthy of paying for any of the brace. They feel a 12-year-old boy with this type of condition should not have any problems living a normal life. My son is 12 and has never slept on his stomach because lying on his chest causes him pain. When he lifts weights, the bar scrapes him and leaves marks. He constantly has to answer questions from children and adults about what is under his shirt (sometimes even accusing him of stealing). He is very excited about the possibilities of a brace. While the issue may not result in a medically necessary condition, the psychological stresses he has dealt with should have been enough for the insurance company to help out. Unfortunately, they do not know what he has to go through daily. Which brings me back to the original statement that my son is an amazing kid. Due to the lack of help from insurance, we cannot afford the brace and have turned to the internet to help our son not have to answer anymore questions about his chest and finally get to do things like sleep on his stomach. Thank you in advance for any help to make this a reality.