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6/23/2014 Latest post:
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
Ryan was diagnosed with chronic granulomatous disease (CGD) when he was a wee lad of 7 months old. We are fortunate that he was diagnosed so early, fortunate to live so close to a medical institution familiar with this condition that now statistically is diagnosed in 5 out of a million people worldwide, and fortunate to have found a community of people with whom to connect on this one specific point that is a part of Ryan's whole life.
We are fortunate that Duke University Medical Center--a commute for us that lasts only as long as a cup of coffee, and the place where Ryan has been known, recognized, remembered, and so well-treated--has engaged in groundbreaking research on curing patients with CGD with bone marrow transplants. We are fortunate that at 15-years-old, Ryan's health condition is seriously awesome for the first time in a long time. We are fortunate that the Duke transplant team is at a seriously awesome place of having great success in curing kids like Ryan for the first time ever. This courtship between the two has been long in the making. So some seriously awesome things are afoot--a bone marrow transplant, a cure, for Ryan.
We have learned that this will be a long and unpredictable process, and we are hopeful but not without some fear. We have so many loving family and friends that this will be where we all meet with our hope, fear, happiness, fatigue, curiosity, frustration, longing and strength. I will try to post regularly, even daily when the process begins, to let everyone know how things are going, and give you the opportunity to send Ryan some awesomesauce messages.
Stay with us on this journey as Ryan's new immune system rolls into town, sets up shop (in him), and goes to work becoming the basis for a CGD-free life for him. I will forget to say this with every post, but please always keep in your kindest thoughts the anonymous donor. Whoever he or she is, that generous person is becoming our family and friend through Ryan.