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Nelli was diagnosed with Kabuki Syndrome at 10 months old after spending 107 days in the hospital including a nicu stay, open heart surgery, spine surgery, feeding difficulties, and a nasty bout of RSV. Her first year was a fight, and she’s had us on a rollercoaster since before she was born and the diagnoses started rolling in.
Today she is a spunky, sassy, happy, loved toddler. She has four therapies a week and with that help she is meeting new inchstones every day.