Shane is an amazing little six-year-old born with CHARGE Syndrome, a genetic anomaly affecting approximately one in 12,000 births. In Shane’s case, he was born with a major heart defect requiring multiplemedical procedures including two open-heart operations and the installation of a pacemaker. Shane is extremely nearsighted and has colobama which greatly limits his field of vision. He is also profoundly deaf in one ear and moderately deaf in the other. Shane was born with only one functioning kidney. He also has verylow muscle tone, which contributes to mobility challenges.
Despite these challenges, Shane continues to be a courageous and curious little boy who loves to explore the world around him cautiously. He has surprised many of his care providers with his progress and recently had his tracheostomy removed, allowing him to begin vocalizing more, although he struggles with language and expression. While Shane has taken a few steps on his own, he is extremely reluctant to do so. His hearing and vision issues make it difficult for him to navigate without support and a reassuring hand.
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