STEFANI

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My Stefani was born 3 months premature, weighing 3 pounds, 5 ounces. She struggled throughout her life, but the many doctors she saw never put the puzzle pieces together and diagnosed her with DiGeorge Syndrome until at age 19 she had a seizure that landed her in an intensive care unit of a hospital. When we finally got to Stanford University Medical Center in California, we were told that Stefani is only one of two DiGeorge patients in the world that presented after age 18. DiGeorge Syndrome explained everything that ever medically happened in Stefani’s life. Unfortunately, DiGeorge Syndrome was not discovered until after Stefani was born. I want to encourage every parent of a child who has been diagnosed with 22q.11 deletion. Your child will grow up and do great things. They CAN live a normal life. Stefani is able to go to college, drive and live fairly self-sufficiently. Granted, there are varying degrees of what 22q can do, but I believe every child should have the opportunity to grow and live just like anybody else. We as parents are our childrens’ first teachers. Together with others we shape and mold our children’s future(s). Don’t let 22q hold them or you back. There are people, agencies, and foundations to help. Just ask.

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