118

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Shane

8

Age:

Accessible Bathroom, Dream Bedroom

Cerebral Palsy

There is an adage about music being a universal language: "With music, you can communicate across boundaries in ways that you can't with ordinary languages." Shane, at eight years old, is non-verbal with numerous disabilities, but it is very evident that he hears or feels the music. Weighing 1pound,13 ounces at his very premature birth, Shane had bleeding on the brain, requiring a permanent shunt that has since been replaced twice. He does not sit or stand without support, with a Cerebal Palsy diagnosis, and is very developmentally delayed. Shane also lives with Visual Impairment-Optic Nerve Atrophy and Generalized Hypotonia, commonly recognized as decreased muscle tone.

Shane's parents were able to move their family, which also includes his little sister, to a ranch style home to better accommodate his wheelchair. Home is a bustling place where Shane's sister is a very active child. She is quite protective of Shane, and dad likes to say she talks enough for the two of them. The family also includes Shane's grandparents, who immigrated from India to help with his care. The financial burden of Shane's care has kept the family from being able to add an accessible bathroom, so they must lift Shane's 60 pounds (and growing) frame and carry him from outside the bathroom to the tub. Giving a bath has become an overwhelming physical and emotional task after days filled with physical therapy, occupational therapy, feeding therapy, vision, aquatic, and speech therapy.

Shane may not be able to carry on an interactive conversation but imagine a less stressful end to a busy day; a safe bath and then his enjoying some music with his family in the safe harbor of a colorful and accommodating bedroom.

Family Photos

Photography by Sweet Life Photography by Kim

Before Sunshine

After Sunshine

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