Zebra Support Squad: Kaitlyn's Craniocervical Fusion Surgery

Hi, my name is Kaitlyn, and I am a Zebra. If you don’t already know, a Zebra is someone with Ehlers Danlos Syndrome (EDS). EDS is a rare genetic condition that affects all the connective tissue in your body. This causes a lot of problems including instability in your joints. My neck is my most badly affected area. Long before my EDS was diagnosed, I had surgery on the base of my skull that has only caused worse neck instability. Now I can no longer hold my head up for very long. I am in constant pain. Even with a special neck brace, I can only remain upright for a couple of hours a day. I spend most of the time lying down or reclining with my head supported. My neck instability compresses my spine, which causes damage to my nervous system that is getting progressively worse. I need a wheelchair to go even a short distance or to be on my feet for more than 30 minutes. I cannot work. Basic tasks like cooking and taking care of myself are painful and difficult.

My only chance for improvement is surgery to fuse my skull to my neck with titanium rods. There is no neurosurgeon in Canada who performs this delicate surgery on Ehlers Danlos patients. My only option is to have surgery in the United States. OHIP does not cover any of the surgery or associated costs. The procedure alone will cost over $100,000. As a recent grad, with massive student loans, I am not in a position to pay out-of-pocket for this surgery that could give me a chance at reduced pain and better physical function. I am horrible at asking for and accepting help, yet here I am asking strangers for that very thing. I would be eternally grateful for any amount that you could give, no matter how small, to help me get my life back.