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Give so Jazzy’s out-of-state treatments, travel, and recovery are paid
Daily, I Face: Loss of use of my legs – wheelchair or walker dependent, Severe head pressure that feels like my body is being crushed and strangled Seizures, vertigo, and balance loss, Hearing and vision loss, Bowel incontinence and organ dysfunction Heart irregularities, nerve pain, and speech difficulties Cerebrospinal fluid (CSF) leaks and vein compression that worsen symptoms Inability to swallow without extra effort.
Like many patients with Ehlers-Danlos syndrome (EDS), my connective tissue does not provide the structural support needed to stabilize the spine, blood vessels, and nervous system. Early MRI testing did reveal Chiari malformation, confirming that part my neurological condition could be seen on standard imaging. But Chiari alone did not explain the severity or progression of her symptoms. We believed the missing piece was craniocervical instability (CCI), as well as other issues.
Unlike Chiari malformation, CCI is difficult to detect on static imaging, even upright MRI. In patients with EDS, the ligaments that stabilize the junction between the skull and upper cervical spine can stretch and fail, allowing abnormal motion that appears only during movement and positional changes. Without dynamic testing — and proper interpretation — instability affecting the brainstem, spinal cord, cranial nerves, and blood flow can be missed. Because access to dynamic positional testing such as DMX (Digital Motion X-ray) and clinicians trained to interpret it is limited locally, we face an impossible choice.
Due to limited awareness, understanding, and access to state-of-the-art testing in Oklahoma, I have been forced to seek medical care outside of the state—care that my insurance does not cover. While several doctors here have supported me along the way, their ability to help is limited because my condition requires specialists across multiple disciplines.
The state has done all it can within its available resources, and I am now continuing my search for answers and effective treatment in other states. With the help of my amazing PCP and a NUCCA doctor, we realized that I am suffering from Chiari I malformation caused by Ehlers-Danlos Syndrome and Cranial Cervical Instability, which is compressing my brain stem. The brain stem controls movement, organ function, heart rate, breathing, balance, sensation, motor skills, vision, and hearing. Every day, I fight to breathe, experience seizures, and endure intermittent loss of bodily function — the functions we often take for granted.
Treatment Plan - I will be receiving treatment at Dr. Ross Hauser Medical in Fort Myers, Florida — specialists in caring for movement disorders through advanced functional testing, prolotherapy, and cervical curve correction. Treatment will occur on a recurring basis every 4–6 weeks to monitor progress, adjust therapy as needed, and ensure the most effective care plan. This course of treatment is expected to continue for a minimum of 6-12 sessions, and will be re-evaluated periodically to assess improvement and determine future medical needs. My Faith and Hope My hope is in God, who has kept me alive, and I find strength in the many people who have prayed for me along the way.
I will use this platform to sing to those who are hurting, pray for those who feel alone, and stand with those seeking answers to uncover solutions for this debilitating syndrome.
I need help covering travel, treatments, therapies, and recovery costs that insurance does not cover at all. Every donation — big or small — brings me closer to proper treatment, healing, and reclaiming my life to serve my purpose. A Message from My Heart...We are bending, but not broken!
Thank you for helping me keep my voice alive. I have learned that I sing because He loves me, and I know that He makes all things beautiful, turning beauty from ashes. He heals the brokenhearted and saves those who are crushed in spirit.
With hope and gratitude, Jazzy
Organizer
