Good afternoon, I need some help. In a couple weeks, I’m scheduled to travel to Maryland to have major surgery. I have a connective tissue disorder called Ehlers Danlos Syndrome (EDS), which causes a fault in the collagen. Many of my smaller joints are hypermobile, and I have spinal stenosis. As a result, I have multiple herniated discs in my neck, along with associated nerve pain. I also have a condition called tethered cord syndrome, which basically means the spinal cord hangs too low, and is attached to the side of the spinal canal. Tethered cord syndrome is a progressive condition, which weakens the lower body, making it increasingly difficult to move.

There are only a handful of surgeons in the States who treat EDS, and my surgeon in Maryland is the best fit for me. His office is out of network for insurance companies, but I’ve managed to get my insurance to recognize him as in network. The problem I have is, the office requires patients pay 20% of the total amount or get a letter from the insurance that says my doctor is in network and the insurance company will pay 80% of the amount billed. My insurance company has told me they cannot agree to that. The deposit is over $10,300.

My family and I have been fundraising for months now, but I’m still short by a substantial amount. If you have any advice on ways to get assistance, please let me know.