CDG. The one thing that floats through the air and lands delicately on a small infant. Swaddles them up in warmth, like a soft, cozy blanket and makes the tiniest change within. Passing from generations, the small scale of diagnosis continues to grow. Congenital disorders of Glycosylation is a set of rare metabolic disorders that are inherited. The variations continue to grow, as does our population.
Avell, my sweet innocent baby, was diagnosed with CDG Type II B at just the age of two months. Not much is known about his type, and that may take years to come. The future is not well written for him, yet each day he continues to smile and grow. He has amazed all of us with how much strength and character he shows. Life is not a book of manuals that guide you through difficult times, it is a maze of wrong turns that eventually turn out right. He has changed our lives for the better and I could not have asked for a better son.
CDG Care is a great organization dedicated to helping find research and also helping connect families together. My hope is to help raise the money needed to eventually find a cure and help other families in the process.
With love and admiration,
Avell, Morgan and Thomas.