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Lilyana was diagnosed at 5 months with KCNQ2. We have had 14 hospital stays so far and tons of follow ups. Even through all of this she is always in good spirits. She has yet to hit any milestones but she is so close on rolling over by herself! What makes Lily so rare is not only does she have a mutation in her KCNQ2, she also has a deletion in chromosome 4, as well as, a mutation in her TSC2 gene. So she’s as rare as they come 🙂
