Asheville resident Jordan Burnette, A 9 year old boy who has been dealing with hereditary Chronic Pancreatitis with a PRSS1 mutationhis whole life. Childhood pancreatitis is so rare that he went 7 years before he was diagnosed. His first episode of pancreatitis occurred at 2months old. Chronic pancreatitis is a condition in which a child’s pancreas has been progressively irritated and becomes irreversibly damaged. This is very painful. The best way to explain this is your pancreas is trying to digest itself. This damage causes scarring in the pancreas and Leads to the loss of a portion of digestive function. Jordan had trouble digesting food and had poor growth, Unable to gain weight. The PRSS1 may have cause Jordan to be born 10 weeks early, and it puts him at a very high risk of developing pancreatic cancer.
March-June 2013 Jordan spent most of his days in a hospital or a doctor’s office. His attacks were coming more often and were staying longer. We had tried all the treatments in Asheville; our only hope was the University of Minnesota Amplatz Children's Hospital. In July 2013 my family came to MN to meet the team of doctors, to see if this transplant was right for Jordan. We were told this would be a long road. My husband and I knew this was what Jordan need.
In Sep 2013 We came back to MN. On Sep 6, 2013 Jordan received a Pediatric Total Pancreatectomy and Islet Auto-Transplant. A TP/AIT incudes removal of his appendix, spleen, gall bladder, duodenum, and pancreas. They harvest the islets cells from his pancreas and transplant them into his liver. It is our hope, that over time, the liver will begin to produce insulin, and prevent diabetes, but right now Jordan is a brittle diabetic. The main goal of the surgery was to reduce Jordan's constant pain, reduce or eliminate his need for narcotic medication, and improve his quality of life.
We are 7 weeks post op, Jordan is still on a feeding tube. We are having a hard time getting his blood sugar under controll. We ae having to stay in MN for the year Because of having weekly doctor appointments.
Now we are in great need of funds to help cover all the medical bills and his monthly prescriptions. We have tryed to get govermont help, But have had no luck. Anything will help.