In early autumn 47 years ago, I was lying in the back seat of a beat-up car with a sheet over my head as a couple of guys drove me deep into the sparsely inhabited scrubland of western Maine. I was on my way to take some scandalous photographs, ones…
Discussion
“God gives special kids to special people.” “God only gives you what you can handle.” “You must be so strong.” “It could be worse.” “I could never do it.” These are phrases I have heard countless times throughout my journey as the mother of a child with special needs. They…
Discussion
The theme of today’s column, in which I will solve one of the most vexing problems facing caregivers of children and adults with Rett syndrome, is “I’ve got your back.” Last week, the International Rett Syndrome Foundation hosted one of its “RettConnect” Zoom calls, this one billed…
Discussion
Parents and physical therapists caring for people with Rett syndrome named gross motor skills and musculoskeletal function as the main physical therapy priorities to support body stability and movement, according to a study. The Dutch study, which used questionnaires and interviews, also described factors that help or hinder physical…
Rett syndrome is a rare genetic disorder that mostly affects females. The disease is characterized by normal early development, followed by slowed growth and a loss of motor control. Learn more about the disease here.
Most cases are caused by a mutation in the MECP2 gene. Scientists have identified mutations in CDKL5 and FOXG1 genes in those who have atypical or congenital Rett. Learn more about what causes the disease here.
Rett syndrome is associated with problems in cognitive, sensory, emotional, and motor skills, and across the nervous system that controls involuntary (or autonomic) functions. Learn more about the symptoms of the disease here.
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