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It is difficult to summarize Natalie’s story briefly, she has lived more, fought harder, struggled and conquered more in her eight years than most of us will in a lifetime. She was born with an ultra rare genetic condition called KBG Syndrome which in itself is a lot to carry for a young girl. But as we have come to learn, Natalie does very little in a simple or easy way. Her medical conditions are many, very complex and incredibly unique. Even amongst her rare disease peers she is one of a kind and her body doesn’t “follow the norms or the rules.” She has seen specialists in multiple states and cities and sees nearly every type of doctor you can see to manage her many health conditions. We joke that it is often easier to tell you what body systems work, than try to explain what is affected. Her health is unpredictable and we have learned to live in the moment and enjoy the times of happiness and health and “normal.” There is no cure for Natalie, no treatment or medicine to fix what is wrong, but we fight every day to make her life the very best it can be… and as normal as possible.
Natalie loves. She loves life, friends, school, her family, painting, swimming and her baby kitties. But most spectacular of all she loves people. From a young age she was drawn to making friends with everyone of all ages and backgrounds. She is often the beacon of light in a waiting room of sad, broken and lonely people we find in hospital waiting rooms. If you are riding down in an elevator be prepared to answer her many questions, because she wants to know where you are from, where you are going and what you will be doing there. In a world where we often float along without noticing who is around us… she is the enigma. She sees you, and she wants to know you. Her body may be broken but her spirit and her heart are strong. To know Natalie is to love Natalie, and I know she will do great things.
