Madison was born with a deletion on her 17th chromosome, resulting in Miller-Dieker Syndrome. This is a severe case of lissencephaly, which is a smooth brain instead of the normal folds that should be present. Some of her symptoms included difficulty feeding/swallowing, developmental delays, cognitive delays, and seizures.
Because of her genetic condition, Madison was in-and-out of the hospital frequently for illnesses and seizures. During hospital stays and in between, Casey Cares was there for our family. They would send little care packages with gift cards and pajamas during hospital stays that gave us some normalcy during those difficult times. They would also give us opportunities to get outside the house as a family between our hospital stays. It’s difficult to plan activities with a sick child, but Casey Cares always had fun tickets or ideas for accessible family time.
When Madison was 16 months old she got sick with a cold, and her little body was not strong enough to push through it. In her last moments, she was surrounded by love and we held her in our arms as she took her last breath. She was a fighter during her short life. She was strong and sassy, and very opinionated. We miss her every day, and can never thank Casey Cares enough for the memories they gave our family.
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