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Fighting for Stability: Support My Complex Neurological Care
Family and friends of Ashley Clifford are raising money to fund uninsured medical expenses associated with a catastrophic illness.
At 32 years old, I am facing an ongoing complex and life-altering neurological and spinal health journey. I was diagnosed with Arnold Chiari Malformation and underwent two brain surgeries in 2009 and 2010 in an effort to relieve brainstem compression and restore normal cerebrospinal fluid flow. While those surgeries helped at the time, my symptoms have progressively returned and worsened. Recent MRI imaging now shows renewed brainstem crowding and impingement, raising concern for craniocervical instability (CCI) and possible tethered cord — conditions that often coexist with Chiari and can significantly impact neurological function and quality of life.
Over the years, my condition has become increasingly complex. I live with severe neurological symptoms including chronic head and neck pain, pressure at the base of my skull, cognitive difficulties, vertigo, autonomic dysfunction, and debilitating fatigue. I also have hypermobile Ehlers-Danlos syndrome, POTS, and spinal abnormalities that further complicate diagnosis and treatment. These conditions affect nearly every aspect of daily life.
I am now seeking specialized evaluation for Chiari revision, craniocervical instability (CCI), and potentially tethered cord syndrome. Unfortunately, there are only a handful of true experts in these highly complex conditions worldwide. Most are located on the East Coast or in Spain, and many do not accept insurance. As a California resident, this requires extensive out-of-state travel and significant out-of-pocket expenses for consultations, advanced imaging, diagnostic testing, and potentially life-saving treatments and/or surgery.
This fundraiser will support the critical medical expenses required for proper diagnosis and treatment, including specialist consultations, imaging, travel, treatment and surgical costs, and post-operative care. My goal is not only to reduce pain, but to preserve neurological function, prevent further deterioration, and regain the highest level of stability and independence possible.
Though I do not yet know exactly how much all of this will cost me out of pocket, I will be sure to provide regular updates throughout this journey. What I do know right now are the out-of-pocket costs for ongoing medical care: yearly in-network out-of-pocket maximum $3,000; yearly out-of-network out-of-pocket maximum $8,000; physical therapy $50/session 1-2x/week; pelvic floor physical therapy $220/session 1-2x/month; EDS/POTS/MCAS specialist $360/session every other month; home healthcare $40/hour, 4 hour minimum/week; specialty prescriptions not covered by insurance $118/month.
Any contribution, no matter the size, helps move me closer to receiving the specialized care I urgently need. If you are unable to donate, sharing this fundraiser is deeply appreciated and meaningful. Thank you for your compassion, support, and for being part of this journey with me!
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