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The Feeding and Swallowing Clinic team at the West Virginia University Center for Excellence in Disabilities saw its 1000th patient, a two-year-old with a rare neurological condition that only 215 people in the world have.
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Maxwell Jackson is one of 213 children worldwide who has Fox G1 syndrome, a rare genetic mutation that impacts brain development and function. While the spectrum of abilities is quite broad depending on the exact genetic mutation, many children cannot walk or talk, and they struggle to communicate their most basic daily needs. The feeding team worked with Maxwell to eat watered down applesauce, softened peaches, and crushed crackers as they were evaluating his muscles and their ability to accept, chew and swallow foods Max’s mother, Marisa, shared that helping her son eat can be an exhausting process taking anywhere from 15 minutes to three hours for just one meal.
“He knows his shapes and colors, but it takes so long to feed him that it takes time away from working on his learning,”—Marisa Jackson
• Families with small children
• People with neurological disorders
• Caregivers, childcare providers
Photos are available for download here.
Read the original story here.CONTACT: Melina Danko
Center for Excellence in Disabilities (CED)