Its hard to believe it's been almost 6 years since Xander's accident.  For 3 1/2 years, he healed, adapted and actually flourished under challenging conditions. He grew strong, healthy and fed his creative impulses with his photography and videography.

 

Then, in July 2015, he participated in a clinical trial at UCLA under the direction of Dr. Reggie Edgerton, the eminent researcher on recovery for those with SCI and the face of NeuroRecovery Technologies. Using external, epidural stimulation...a non-invasive application of electricity to enliven dormant, residual intelligence in the spinal cord.  Xan was a perfect test subject. Healthy, strong, self-disciplined, dedicated to improving his lot and sincere in furthering the scientific advancement of possibilities for the SCI community.  

 

 

Xan had exceptional response to the out-patient trial.  Within 3 months he was able to sand for up to 30 minutes and had a positive autonomic response. He exceeded the expectations of the scientific team and they used him as an example of what their technology could accomplish.  But then, the newly enliven regions led to excruciating pain and unrelenting, extreme spasticity.  The spasticity led to him breaking his foot which led to him being dropped from the trial.  There was no medical team associated with the trial and they were unprepared to respond to this unfortunate development so they simply sent him out into an uninformed medical world, who, so far have applied traditional remedies, such as botox, nerve blocks, implanted spinal cord stimulator and baclofen pumps...none of which have alleviated or even lessened his symptoms.  

 

Two years of unrelenting pain, no relief from his body jerking constantly, lack of sleep and appatite have taken a serious toll on his mental health and his ability to funtion at a practical level.  He no longer shoots, has withdrawn from his circle of friends, has difficulty managing his health care and all the other minutia of existence.  His life is now dominated by doctor appointments and therapy sessions.  He is in the grip of profound anxiety and depression.  

 

It is our mission to get him back to the state he was in before the trial began.  It has been incredibly difficul for him.

Xander reclaiming the intersection where accident happened.

Ongoing Concerns

 

Continued outreach to find options for his relief. Exploring other therapies.

Psychological help.

CBD /THC oil for pain management.

Replacement of equipment that is wearing out.

 

SUPPORT  XANDER

When the accident happened.  Video by Susan Black

http://www.youtube.com/watch?v=NZlGtINt_hE



You can listen to Xander on his first radio interview http://kruufm.com/node/14577