Ashlyn Blocker, loves pageants and playing the clarinet, but was born with a congenital insensitivity to pain with anhidrosis (CIPA), a disorder that affects the way signals travel from her central nervous system.
Unlike most babies, Blocker never cried when she was hungry or had diaper rash.
“Everyone thought, ‘Oh, what a good baby you have,’ you know,” a news channel quoted her father John, as saying.
“But the signs, as time went on, the red flags started going up,” he said.
Her parents first realized that something was wrong with her when they took their 8-month-old to the eye doctor to treat her irritated eye.
“When they put the dye in her eye, everyone kind of gasped.
“She had a big corneal abrasion across her eye. They were just astonished that she wasn’t in pain,” he said.
The doctor’s visit led to the diagnosis of CIPA, which affects only about 100 people worldwide.
“It was scary because, you know, there weren’t very many good outcomes that were involved with this condition,” her mother Tara said.
“I mean, you know, people passing away from appendicitis because they didn’t have the warning signs – and bone infections.”
Blocker’s toddler years had been the most difficult for her parents.
She would injure herself, “biting, burning her hands, different things,” John said.
“Tara actually would wrap her hands up with athletic tape. She’d be our little boxer,” he said.
The family has photographs documenting the injuries that Blocker sustained as a toddler.
Her father said sending his daughter out the door every day, not knowing what would happen, had been “rough.”
University of Florida researchers have been testing Blocker since 2004.
A few years ago, they pinpointed the gene that affected the strength of pain signals sent to the brain.
The findings might offer new treatments for people with chronic pain but are not likely to help with her condition.
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