My oldest son,who is nine, has Treacher Collins. He's a great kid.In the beginning, we had insurance through my husband's job and after our son was born, my husband was laid off after excessive badgering from both the insurance co. and my husbands work about how much our son was going to cost them.We sent in the papers to keep this insurance repeatedly and they say they never received any of them.Fortunately for us,we were very low in income back then and we qualified for medicaid for our son and he went to a great plastic surgeon,Dr. A.Wolfe in Miami. But my husband has taken a better job with much better pay and now we don't qualify for anything. Our new pediatrician signed off for our son to have an ear done and everything went through on the first surgery, but when it came time for the second stage of the ear surgery,the new insurance co. got ugly.They refused to pay and we had to write to our state senator to get them to pay. They now refuse to pay for anything else. We don't know what to do. Does anyone have any ideas? We can't afford to pay for every surgery on our own. We went to see the Shriner's new craniofacial center in Chicago and they were very unprofessional when we went.The surgeon wasn't even there and we met with a medical student. I was appalled.They went on and on about experimental things they were trying and acted as if my son was a lab rat.They wouldn't tell me of any parent's who I could talk to who have used them either. Has anyone else had any experience with them? I don't feel I can trust them after that experience. Please email me if anyone has any ideas on what we can do. I would be grateful for any ideas. Thank you. Jackie