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Life with CGD

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In April 2013, the Cooley family welcomed their second child, Sean Ryan. After some problems regarding his weight during the pregnancy, the Cooley’s were thrilled when their healthy baby boy was delivered. At two-and-a-half months old, the Cooley’s were worried that Sean was having stomach issues, but when they saw the results of X-rays done on him, it was clear that Sean had contracted his first pneumonia. After their weeklong stay in the hospital, the pneumonia spread from the bottom of his left lung to the upper lobe and he was transferred to the Children’s Hospital of Colorado. There, the Cooley’s worked with a fantastic team of doctors who, after a month filled with testing, discovered that Sean has a rare immune disease called Chronic Granulomatous Disease (CGD).

CGD is an inherited primary immune deficiency disorder usually found in infants and children that leaves them highly susceptible to infection and inflammation. This is due to a genetic mutation that affects white blood cells such as neutrophils, monocytes, macrophages, and eosinophils. Thankfully, the FDA approved a treatment for CGD patients in 2007. The drug, Actimmune, works to reduce the frequency and severity of serious infection associated with CGD. Also, bone marrow transplants have been found to be effective in individuals with CGD.

Sean’s diagnosis and the associated developmental delays have been tough for the Cooley’s. The identification of Sean’s condition though, has given them hope that the autoimmune disease that their daughter is fighting will be diagnosed soon. The Cooley’s are extremely thankful for their team of doctors that are constantly working towards bringing awareness and further cures to this disease and could not be more proud of their two children.

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For more information about CGD, please visit our member organizations: Chronic Granulomatous Disease Association, Inc. and the Immune Deficiency Foundation.