Urgent Need - Rare Disease CCI/Chiari Neurosurgery

My name is Emily Yeh. For the past two years, I have been struggling with a severe complication of my genetic connective tissue disease (Ehlers-Danlos Syndrome), called Craniocervical Instability with Chiari Malformation. This means that the ligaments that support my skull and vertebrae in my neck are unable to protect my brainstem; they have become too fragile and damaged to hold my head safely on my neck without the aid of a 24/7 cervical collar. Without the aid of my neck brace, which I have needed to live in since August 2019, my brainstem is constantly subjected to stretching, bending, and pinching.  Normal, healthy spines do not let the skull and vertebrae slide more than 1-2mm, any more than this amount causes damage to the brainstem, a vital structure that controls breathing, blood pressure, heart rate, digestion, autonomic nervous system function, and muscle control of the body. My skull, C1 vertebra, and C2 vertebra slide more than double this at 5mm in all directions, and my neck partially dislocates when I turn my head (see attached imaging). My foramen magnum (the hole at the base of the skull that the brainstem passes through) is abnormally small. This combined with the instability causes blockages of cerebrospinal fluid, which is the cushioning fluid that the brain floats in. The only treatment for instability of this degree is neurosurgery, which must be performed by an Ehlers-Danlos knowledgeable surgeon due to the high risk of complications from my fragile tissue. As my neck is severely unstable, something as simple as a minor car accident or a bad fall could put me at risk for internal decapitation (a full dislocation of the skull from the neck, causing paralysis and/or death), vertebral artery dissection (blood vessels to the brain split open), and permanent damage to my vision, breathing, and nervous system. I have been fortunate enough to find a neurosurgeon who is willing to perform a lifesaving surgery on my neck. He will need to widen my foramen magnum to allow my cerebrospinal fluid to properly flow and protect my brain, he will also use titanium plates and screws, along with my own bone marrow, to fuse my skull, C1 and C2 in a stable position so that my brainstem can once again be protected from the damage that merely existing is causing. With the stability and protection restored, my body will be able to begin the healing process from the damage it has accumulated. Every day, I live with debilitating symptoms that have severely impacted my ability to function. I have excruciating neck pains, near constant muscle spasms and headaches, my ears ring 24/7. My vision has been progressively dimming and narrowing, and at times I see double. My muscles in the rest of my body have begun to weaken and atrophy, and I am prone to tripping and falling, I experience vertigo, tremors, and full-body spasms. My heart rate and blood pressure cannot regulate themselves, and I require the use of a wheelchair to leave the house. Even with my neck brace and wheelchair I experience crippling exhaustion every day of my life. I have become completely disabled by these conditions, and I have had to give up my dream career as a Medical Laboratory Scientist. In the span of a few years, I went from working in a hospital lab helping to save lives, to relying completely on my loved ones to survive. Unfortunately in order to get this livesaving surgery, I need to pay my surgeon a deposit of $11063.20 by the 2nd of April, a cost that I as a disabled person cannot afford at such short notice. Until I can meet this amount which is 20% of the cost of surgery plus my insurance deductible, my surgery which is scheduled for May 6th, cannot proceed and will be cancelled, leaving me once again with no ability to regain my quality of life. Please consider donating to help me once again reclaim my life and get back to giving back to those who have helped me along this journey. Thank you very much for your consideration and generosity. (PS: I have factored in GFM's fees (2.9% plus $0.30 per donation) into my campaign total) Digital Motion X-Ray showing Sliding of the skull and vertebrae in flexion and extension: Digital Motion X-Ray Showing C1 Sliding off of C2: Rotational CT showing partial dislocation of C1-C2 vertebrae: MRI showing compression and crowding at the base of skull: