Update On James Condition - August 2021

Hey y’all. It’s been a while since we’ve updated everyone on James’ condition. First and foremost, thank you all for anyone who’s ever read this, prayed for James, sent him well wishes or donated money. We are so grateful for you. 

From Pediatric Cancer Survivor to Immune Deficiency

When we originally started this go fund me campaign, the doctors diagnosed James with combined variable  immunodeficiency or CVID.  At the time, he needed IVIG infusions as  he was getting sick all the time and in a span of about 18 months he had about 10 hospitalizations. When the doctors began pursuing approval to get James immunoglobulin infusion, they had to do some tests to prove to the insurance company that  he indeed needed this medication. Unfortunately when they did those tests James' body did respond very slightly but that  was enough to deny him this treatment. He did start to feel better and his lungs got better but he was never approved for the infusions. He continues to struggle with low immunoglobulin but thankfully has not had recent severe lung infections that require hospitalization. 

Spinal Tumor and Chronic Pain

James began trying to work again, only to start having severe back and nerve pain. James was diagnosed in 2019  with a benign tumor on his spine. The tumor started causing considerable back pain and nerve pain. James elected to have the tumor removed in October 2020. After the removal of the tumor, James was still experiencing pain and had a fall. After he fell the pain in his foot changed. It began as a burning pain that was so sensitive that even a sheet, or a cotton ball  would cause an immense amount of pain. His foot would turn purple and get very cold. He was diagnosed with Complex Regional Pain Syndrome (CRPS) also known as Reflex sympathetic dystrophy or (RSD). We have come to understand that this disease is extremely painful, chronic in nature and there is not a definitive treatment but merely symptomatic treatment.  Information about CRPS can be found at www.complextruths.org 

Unable to Walk, Work, or Drive

James has been unable to work, drive, and has  needed crutches to walk for the last 4 months. He is blessed with loving friends and family that help the best we are able. We have applied for insurance through the county and also for social security disability. This is a long process for approval, usually two years or more.  

James is a fighter and has been since the age of 6 when he beat cancer.  He doesn’t like to ask for help but unfortunately he still needs it until he can get some government assistance. Donations are appreciated as well as prayers, words of encouragement, sharing a meal or just hanging out!  Thank you for taking the time to read this. We will continue to post updates about his journey with CRPS. 


~ Pam and Amy