Kayleigh Michelle Abbott is a beautiful, boisterous fourteen year old young lady getting ready to enter her first year of high school. She was diagnosed with Arnold Chiari Malformation at one and a half years old and mitochondrial disorder at around eight. She had a decompression at one and a half years old where they removed her first vertebrae, also removing a portion of her skull, and performed tissue grafts within the dura mater (the grey area of the brain). At around eight years of age, she had an episode that made us think we might lose her and caused her to have a second decompression and yet another tissue graft. Soon after, we made an appointment with a molecular geneticist who felt she needed to have a spinal tap as well as a muscle biopsy, and was diagnosed with the mitochondrial disorder. Kayleigh has been fighting with this her whole life. We have bounced from specialist to specialist and have been given a million different possible diagnoses with no clear resolution. She has been through more than most of us will endure in our whole lives. She has seizure like episodes that were first treated as reflux, but as time went on, we realized that our baby was not developing the way she should. After knocking down as many physician's doors as possible we finally received the Chiari diagnosis from an Egleston neurologist. The surgery improved her condition greatly at that time. She learned to walk with orthopedic braces and lots and lots of physical and occupational therapy, which helped her to finally sit up on her own and hold her head up as it was always off to the side. Years have passed with the seizure like episodes occurring at different intervals, sometimes frequently, sometimes sporadically. We finally got tired of taking her to the ER because we always came back empty handed so we tried to handle them at home as best we could. She has seen a broad spectrum of specialists, physicians, residents, nurses, you name it; she has been there. Kayleigh has had less of the scary episodes she used to have, but experiences increasing headaches that occur every single day as well as stomach issues that she is prescribed Hycosamine for, but it seems to have very little impact on these issues. She has an upcoming appointment with her neurosurgeon to address her headaches and other issues. What we are finding is that all of this has affected her not just physically, but emotionally and has caused significant developmental disabilities as well. She has also been diagnosed with a non-specified neurodevelopmental disorder associated with her above medical conditions. She desperately needs to be seen at a facility in in Atlanta called The Amen Clinic (http://www.amenclinics.com/atlanta/), where she will spend two to three days and will go through a battery of tests that include brain and PET scans to try and figure out what treatments will work best for her. I have every confidence that this will greatly improve her quality of life; however, these tests and this clinic are not covered under either of the insurance companies I have her under. In fact, this clinic accepts NO insurance and requires all fees to be paid up front. Just to schedule an appointment, a deposit of $500 has to be made and the rest must be given at the time of the appointment, which totals to $3,950. I, of course, cannot come up with that amount and the wait time just to get an appointment is already a month out. I want to get this done as soon as possible so I can find people who want to fight for her and help me find out what her "normal" will be. I greatly hesitated going this route, but I want to do whatever I possibly can to make this happen. I cannot begin to express my gratitude if you took the time to read this, whether or not you make a donation.