Like a typical seven-year-old boy, Brandon Long loves sports, playing video games and giggling with friends. Unfortunately, he also suffers from chronic pain due to hereditary pancreatitis (HP). His parents, Jennifer and Jamie Long, share that Brandon has had symptoms of the condition since birth but was only diagnosed three years ago because it’s a little-known disease.
Through genetic testing, doctors learned that Brandon has a PRSS1 gene mutation that causes hereditary chronic pancreatitis. Pancreatitis is the inflammation of the pancreas, and HP is a rare genetic condition characterized by recurrent episodes of pancreatic attacks, causing extreme abdominal pain. There is no existing cure for HP today.
The East Cobb family has been doing everything possible to create a normal life for Brandon, despite his chronic pain episodes. Brandon went to Kinkaid Elementary School last year but his recurring pain has prevented him from going to school this year. His parents hope that he can join his friends as a second grader this May.
Brandon is pictured with his parents, Jennifer and Jamie Long.
An avid Georgia Bulldog and Carolina Panthers fan, Brandon has spent much of his young life in and out of the hospital. His parents try to manage and prevent his pain episodes, but even positive stress like a birthday can put him in the hospital for weeks at a time. He requires narcotic pain medication and is on a feeding tube to
meet his nutritional needs.
“Brandon is such a positive kid for everything he has been through, and we are all extremely grateful for all the support he has received in the community,” says Jennifer. “I created buttons for all of Brandon’s fans, and I love to see the smile on his face when he sees someone wearing his button. So far, I have given away 600 buttons.”
The positive news for this special boy is that he is stable enough right now to travel to Minneapolis for a unique surgery scheduled for Friday, Feb. 12. This treatment option is new and only done at the University of Minnesota. Surgeons will remove his pancreas, gallbladder, spleen and a portion of his small intestine during the 8-12 hour surgery. The surgeons will then extract insulin producing islet cells from his pancreas and inject them into his liver. The goal of the surgery is to improve Brandon’s quality of life. The recovery will take 2-3 months, so the family plans to stay in Minneapolis during that time.
Brandon’s parents are looking forward to the surgery and grateful for the opportunity. They also want to share information about this disease with others, so that other families might be able to learn from their son’s diagnosis and experience.
Family members have established a GoFundMe account to help offset the costs of surgery, recovery and living expenses in Minnesota not covered by insurance. Visit gofundme.com/brandonthebrave to learn more about Brandon’s fight, surgery and how to help support this local family.
Reprinted from EAST COBBER’s February 2016 issue
