Help Casey Keep Her Skull In Place EDS,CCI
Donation protected
Casey is a 38yr old mother of two whose existence was recently changed with the news that her skull and entire cervical spine are extremely hypermobile. As a result of Craniocervical instability, Cranial settling, Atlanto Axial Instability and Subaxial instability from skull to c7 she is in danger of internal decapitation.
At this stage she is beginning to experience a form of seizures associated with the significant amount of brainstem compression as well as reduced oxygen saturation and extreme heart rates and blood pressure readings. In essence, this means her skull is slipping backward and forward to a much larger degree than it should and AAI means turning creates overrotation of the c1 and c2, causing it to dislocate, all of which causes extreme pain and a dizzying array of neurological symptoms.
This is all in conjunction with the remaining ways that her primary diagnosis manages to affect her.
In Australia treatment options are nearly nonexistent unfortunately.
Casey has been blessed to find an amazing surgeon who is starting to change that for the very few here with issues this extreme. However, he is 8hrs away and Medicare and Bupa don't see fit to cover a lot of the expenses associated with craniocervical fusions or the assessment of them. To date in the last 3 years to access these surgeons Casey has paid just over $72 000 in surgeons fees and imaging. Her halo brace alone was $4500. It doesn't pay to have obscure conditions. Casey has been quoted a cost of $7760 for the surgery itself, she will be fused from skull to c4 as she already has a c567 fusion in place. This amount doesn't include the anaesthetic gap, the hospital excess, the travel to and from Sydney nor accommodation for a week after her hospital stay to access rehabilitation and apropriate cardiology testing. If you are able to help in any way please do... Even just a share helps her return to a life lived outside of her bed
Organizer
Casey Lewis
Organizer
New South Wales
