James Huber James Michael Huber

First post: May 23, 2019 Latest post: Aug 15, 2020
James was born 10/1/17, and was a beautiful, healthy baby boy. He was Aaron & Dana’s first child, and they were so in love. When James turned three months old, he developed a respiratory infection, and was hospitalized for three days. This being a common issue for newborns in the winter months, it didn’t set off any red flags. When James turned ten months old, he developed enlarged cervical lymph nodes (large nodules on both sides of his neck). They were told James needed surgery to drain the lymph nodes, but this was a common procedure for young kids. James did great after his surgery, and was sent home the next day. Three days later, James developed a 104 temp. Aaron & Dana brought him into the ER, and they drew labs and did xrays. James was hospitalized again for 4 days,  and then was discharged home with a follow up appointment with a pediatric immunologist. On James’s one year birthday, he went to the immunology appointment and was diagnosed with a rare immunodeficiency. 
James has Chronic Granulomatous Disease. It is rare— only affecting 4 in a million people. James’s white blood cells (neutrophils) don’t function like they should, so he is unable to fight off certain bacteria and fungus. This puts James at a very high risk of developing severe, life threatening infections in his brain, kidneys, lungs, GI tract & many other organs. He also is at risk of developing granulomas, which are masses that form in organs. James has been on antibiotics, antifungal medication, iron, and shots to try and manage the infections and granulomas, but this will only buy him some time before he gets serious infections.  The only cure for this disease is a stem cell transplant. It will allow James the opportunity to have a healthy life free from infection and granulomas. With transplant comes many risks and complications, but it is the best option for James to live a normal life. James will be undergoing a stem cell transplant using umbilical cord blood at Duke University Hospital. We appreciate your support, thoughts, and prayers. This is not going to be an easy journey, but we have been blessed with wonderful family, friends, and health care professionals providing excellent care for James. He will beat this, and never have to remember a time when he had this immunodeficiency. We love you all. Xoxo

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