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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
Shining the Sun on Caregivers
“Reynolds would never have been ready for his upcoming kindergarten year without his time at Sunshine School,” said Reynolds’ father, Ryan
Tricia Moore
Jul 8, 20243 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
What Parents Need to Know About SUDEP – Sudden Unexpected Death in Epilepsy
Epilepsy affects up to 470,000 American children and about 11 million children ages 15 and under worldwide.
Rare Parenting
Apr 28, 20243 min read
What is a Child Life Specialist in the Hospital?
Parents of children with medical conditions or complex needs are usually familiar with an array of hospital staff, including doctors...
Rare Parenting
Mar 19, 20244 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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Meet Tanmayee: A Story of Resilience, Reinvention, and the Power of Connection
“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.”
mejo
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