If you’re not familiar with Konnie’s condition, please let us fill you in. First, she suffers from a genetic connective tissue disorder called Ehlers Danlos Syndrome. Her collagen, which is the most abundant protein in the body and acts as a glue to hold the body and its organs together, is faulty. This means having very loose joints that spontaneously dislocate or subluxate because muscles and ligaments don't hold like they are supposed to; in Konnie’s case, her EDS causes spinal and craniocervical instability and bending and pinching of the brain stem and spinal cord. Her EDS has caused a co-morbid condition called Chiari Malformation, in which the brain slips out of the skull and into the spinal column and, if untreated, leads to death. Her first brain surgery in 2005 stopped the progression of her Chiari, but her symptoms have progressively returned.
The good news is that we found an expert neurosurgeon who specializes in EDS and Chiari. Dr. Fraser Henderson is one of the only EDS specialists in the world and he has devoted his life to researching and caring for his patients.
We have excellent insurance, but we have been informed that our portion of the surgery exceeds $5300. Add to this travel and ten nights in a DC hotel, and we are looking at about $7000. Any funds we receive will be used for expenses connected with the surgery, our trip to Maryland, and any further medical procedures or appointments consequent to the surgery.
We would certainly appreciate any help you can offer and/or what is in your heart to give. This is a lifelong condition with no cure, and it causes horrible, debilitating pain that never goes away. Treatment is geared towards making Konnie more comfortable and preventing progression.
We have been so blessed with amazing friends and are grateful for all your support. We know it’s the end of the school year with lots of expenses, vacations, graduations, weddings, etc., but please consider giving. Thank you!
Konnie and John Jeffire
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