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Parents of children with disabilities, including Charlotte with Ogden Syndrome and Tony with SYNGAP1-related disorder, face significant challenges in securing appropriate residential care due to limited placements and long waitlists. Despite efforts to find suitable programs, many families are forced to keep their children in public schools or homes, often with inadequate support. The shortage of specialized care facilities and caregivers leaves families under immense stress and raises concerns about long-term wellbeing and future care as children age.
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