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Our Unexpected Hospital Visit While On Vacation
As a parent of a child with a rare and complex medical condition, every outing can feel like a high-stakes operation...
Ryan Sheedy
Jul 11, 20243 min read
Does Your Child Need Genetic Testing?
While you might think your child is only at risk of a genetic disease if a certain condition runs in the family...
Rare Parenting
Jul 10, 20244 min read
Tethered Spinal Cord Syndrome and Surgery: What Parents Need to Know
A tethered spinal cord (or tethered spinal cord syndrome) is a developmental abnormality that occurs in about 2 of every 1,000 births...
Rare Parenting
Jun 25, 20243 min read
Undiagnosed Children: What to Do Next
Parents of children with rare diseases may spend years tracking down effective treatments as they manage symptoms...
Rare Parenting
Jan 19, 20245 min read
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“I remember feeling completely overwhelmed,” Madhura says. “Suddenly, we were trying everything—steroids, a ketogenic diet, multiple medications, and eventually, a VNS implant. She was the youngest patient at the hospital to get that device—just 27 months old.”
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