From scratches on the playground to spills while biking, parents are constantly trying to protect their children from pain. But what if pain was the one thing your child needed the most?
While Ashlyn Blocker may seem like a normal 12-year-old girl who loves pageants and playing the clarinet, she suffers from a rare genetic disorder that prevents her from feeling pain.
Ashlyn 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, she never cried when she was hungry or had diaper rash.
“Everyone thought, ‘Oh, what a good baby you have,’ you know,” said Ashlyn’s father, John Blocker. “But the signs, as time went on, the red flags started going up.”
Her parents first realized that something was wrong 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,” John Blocker said. ”She had a big corneal abrasion across her eye. They were just astonished that she wasn’t in pain.”
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,” said Ashlyn’s mother, Tara Blocker. “I mean, you know, people passing away from appendicitis because they didn’t have the warning signs – and bone infections.”
Ashlyn’s toddler years were the most difficult for her parents.
She would injure herself, “biting, burning her hands, different things,” John Blocker said. “Tara actually would wrap her hands up with athletic tape. She’d be our little boxer.”
The family has photos that document injuries that Ashlyn sustained as a toddler. Her father said sending his daughter out the door every day, not knowing what would happen, was “rough.”
University of Florida researchers have been testing Ashlyn since 2004. A few years ago, they pinpointed the gene that affects 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 Ashlyn’s condition.
This past November, the Blocker family started Camp Painless But Hopeful for families suffering from CIPA.
“Ashlyn had a dream one night that we started a camp for families like us. I knew instantly what I was meant to do,” said her mom.
The camp hosted eight families and John described Ashlyn’s “instant bond” with the other children as “priceless.” Ashlyn crochets and sells what she makes as a fundraiser for the camp.
“It was an amazing, amazing, unforgettable time for sure,” Tara Blocker said. “I mean, to actually be in a room and presence of someone who knows what we’ve been through. I mean, know your daily life and daily struggle – and to know you’re not alone anymore. I mean, it was just amazing.”
What’s in store for Ashlyn’s future?
“I think its gonna hold everything she wants it to,” her mother said.
For more information on camp Painless but Hopeful, visit: http://www.painlessbuthopeful.org/