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 was progressing rapidly. They've now had 3 neurosurgeries to help halt the progression and put them on a path to recovery. Two of those surgeries were out of state & were only partially covered by insurance. We have yet to see if the nerve damage is permanent. Coverage for surgeries and care 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 pay for marketplace insurance out of pocket.  

  The recent Cranio-cervical fusion surgery and Tethered Cord Release surgeries required 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 care for Johnny (11)and Sparrow (13). In 2017 we lost the kids dad (Blaine's stepfather) to suicide, so it is really just me! Any funds raised go directly to supporting our family through this crisis and medical/travel/relocation expenses as they come up. There is the possibility of another out of state surgery.

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!