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Lillie was diagnosed with PKS at 7 months old. She is non verbal, non ambulatory, severely delayed, and on the autism spectrum. Having a rare condition makes every day a new challenge. Even though Lillie is generally happy and healthy, as she continues to grow and develop, we are always stumbling upon new aspects and subdiagnosis of her that require new specialists, therapies, equipment, procedures, surgeries, and activities. Nothing is ever just easy, but Lillie handles each day with a smile, a squeal, and some clapping! Having Lillie has taught us to appreciate the smallest victories as tremendous achievements, and has also taught us more patience, empathy, and compassion than I ever knew possible. Everyone Lillie encounters is better for having met her, she spreads both happiness, challenges, and unconditional love wherever she goes.
