Blaine’s hEDS medical crisis

Since February 2022, Blaine ( Esme) has been severely disabled (hopefully mostly temporarily!) by two spinal manifestations of Ehlers-Danlos Syndrome; Cranio-Cervical Instability and Tethered Cord Syndrome. The resulting brainstem compression and spinal complications have rendered them extremely weak and profoundly fatigued, unable to walk, talk, brush their teeth, read, watch things or engage in the world in any way for more than a few moments here and there. Their condition is progressing. There’s surgery that can help halt the progression, but will likely be out of state & not covered (or only partially covered) by insurance. Waiting for approval for insurance coverage also risks permanent nerve damage. Coverage would have been denied because we had Care Oregon/ Medicaid, and neurosurgeons do not take patients with out of state Medicaid for this reason so we’ve bought marketplace insurance out of pocket.    
   The average cost of craniocervical fusion surgery is over 50,000 (plus hospital stay etc- more like 180,000 but no one’s given us a direct quote yet) -this surgery may be more complex -as in multiple fusions- and therefore more expensive. Tethered Cord Release surgery (SFT) looks to average around 30,000. Both surgeries require travel, extended stays and have long recovery times. 
   I (April, mom!) am working full-time as caregiver while also trying to work as much as I can and caring for Johnny (10)and Sparrow (12). Any funds raised go directly to supporting our family through this crisis and medical/travel/relocation expenses as they come up.   As I wake up to a sort of triage situation every day, my heart breaks. We all just want to see Blaine better- Hear them laugh again, see them walk into the kitchen. We are so grateful for any help holding us in this way!