On a snowy February morning, the Jackson family from St. Albans, West Virginia traveled to Morgantown to be seen by the Feeding & Swallowing Clinic team at the West Virginia University Center for Excellence in Disabilities (WVU CED). Maxwell Jackson is the Feeding & Swallowing Clinic’s 1000th visit, a milestone moment for the WVU CED and a truly special little boy.
Two-year old Maxwell is the only child in West Virginia and one of only approximately 213 kids worldwide who has been diagnosed with FoxG1 syndrome. FoxG1 is a rare genetic mutation of the FoxG1 gene that impacts brain development and function. This severe neurological condition is characterized by seizures, inability to control body movements, and lack of speech. 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. (International FoxG1 Foundation).
Today, Maxwell’s mother and grandmother along with older brother, Luca, are returning to the Feeding & Swallowing Clinic after an initial visit in October. Marisa, Max’s mother, is returning to the clinic with great strides in Maxwell’s eating habits over the last few months but still looking for answers on how to ensure that Maxwell is getting the nutrients that he needs to grow and thrive. Since their last visit the family have implemented many suggestions from the interdisciplinary feeding team that consists of a nutritionist, speech language pathologist, occupational therapist, psychologist and social worker. Marisa shared that helping her son eat can be an exhausting process taking anywhere from 15 minutes to three hours for just one meal depending on his day. “He knows his shapes and colors, but it takes so long to feed him that it takes time away from working on his learning,” said Marisa.
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. Other health providers shared information about wheelchair assessments and other social service programs that could benefit the family.
The Feeding & Swallowing Clinic was started in 1993 at HealthSouth and was formalized when it moved to the WVU CED in 1996. The clinic not only sees clients with feeding and swallowing disorders, it serves as a training site for WVU students from various programs. For more information about the Feeding and Swallowing Clinic, visit www.cedwvu.org.