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Living with Nemaline Myopathy: Family Support and Daily Function with Low Muscle Tone
Nemaline Myopathy (NM) is a rare neuromuscular disorder that affects voluntary muscle strength. It’s caused by genetic mutations that impair the structure and function of muscle fibers. Children with NM often have low muscle tone (hypotonia), muscle weakness, and may experience breathing, feeding, and mobility challenges depending on the severity of their condition. Living with…
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Dandy-Walker Syndrome: Family Life and Everyday Mobility Solutions
Dandy-Walker Syndrome is a rare congenital brain condition that affects the cerebellum—the part of the brain responsible for movement, coordination, and balance. It often involves enlargement of the fourth ventricle, partial or complete absence of the cerebellar vermis, and increased fluid buildup (hydrocephalus). For many families, this diagnosis brings a range of questions: How will…
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Living with Dystonia: Mental Health, Daily Routines, and Therapy That Helps
Dystonia is a complex neurological movement disorder that causes involuntary muscle contractions, twisting, and repetitive movements. It can affect one part of the body (focal dystonia), multiple areas (segmental dystonia), or the whole body (generalized dystonia). For children, dystonia often overlaps with other neurological conditions and may require long-term medical care and therapy. While physical…
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Caring for a Child with Cerebral Palsy: What Every Family Should Know
Cerebral Palsy (CP) is a lifelong condition that affects muscle tone, movement, and posture. It is caused by abnormal development or damage to the parts of the brain that control movement, often before birth. While the condition varies widely from child to child, what remains constant is the need for compassionate, individualized support—at home, in…
