IDF Reel Stories is a patient-generated video community designed to encourage and empower fellow patients and their loved ones. In addition to general stories of hope and inspiration, there are video testimonials that touch us on some level – whether as individuals, families or as members of the community.
Below are videos featuring those living with Chronic Granulomatous Disease (CGD). Find a video that relates to your own life experience. Or, better yet, share your own video story with our community! If you are interested in submitting your own video, contact us.
Videos from the Community
About Melissa, Chris and Rocco
Rocco, born in 2009, was diagnosed with CGD, and had an umbilical cord blood transplant in 2010 at Duke University Medical Center. His parents are happy to report that Rocco was successfully cured, and today he is a happy and healthy young boy.
Diagnosed at 4 months, he talks about his experience with CGD throughout his life, including his current status at college, work, and within a relationship. He advises, “Don’t let CGD define you. Know that you are your own person.”
About Chelsi and Ana
Chelsi and her daughter, Ana, are CGD carriers. Her 6-year-old son has CGD, and she describes their experience as a family. She advises that “knowledge is power” and that the more you learn about CGD, the better you become. Despite her son’s diagnosis, she describes their life as “pretty normal.”
Felicia is the mother of a son with CGD. She discusses their journey, from his diagnosis at 6-months-old, to the energetic 3-year-old little boy that he has become today. She describes how the IDF helped her connect with other CGD families after his diagnosis, and how that helped her foster a sense of hope and the feeling that she “could do this.”
Miguel is the father of a 3-year-old son with CGD. He talks about how he and his wife have learned to successfully manage their son’s condition, thanks to daily prophylaxis. Miguel describes being at a “crossroads,” as he and his wife contemplate a bone marrow transplant for their son.
Gina is from the Twin Cities, MN. She is a sales operations analyst with an MBA from St. Mary’s University of Minnesota. She also has a BA in Economics from the University of St. Thomas. She is married and has one son.
About Mary and Stephen
Mary, Stephen’s mother, is from San Marino, CA. She is the president and founder of the CGD Association and a member of the IDF Board of Trustees. Stephen is from Altadena, CA. He works as a software engineer at Jet Propulsion Lab (JPL). He graduated from the University of California, Santa Barbara with a B.S. in Physics and Computer Science. He also has a Masters degree in Computer Science from the University of California, Los Angeles.
Burns is from Greensboro, NC. He has worked for Terminix Triad in Greensboro for 14 years. He graduated from The College of Charleston in Charleston, SC with a Business Administration degree. He is married to his wife Laura, and he has a 10-month-old son named Mills Blackwell.
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