A severe diaper rash when she was 2 weeks old didn’t faze her. She never fussed when she was hungry, so her parents had to remind themselves to feed her every two hours. At 6 months, she laughed and cooed as a nurse administered stinging drops to dilate her eyes.
Doctors found that Ashlyn had a one-in-a-billion condition: She couldn’t feel pain. And unlike most people in medical literature with a documented insensitivity to pain, she was otherwise normal and healthy.
I’s not that she feels nothing. She can feel pressure, when something’s hot or cold, different textures and even burning. But her body’s nervous system doesn’t relay messages of pain. That was apparent when she bit a chunk of skin off the side of her hand as a toddler. And when she chewed her bottom lip so much that the swelling hid her top lip. And when she ripped out two front baby teeth trying to remove the cap on a ketchup bottle.
It sounds like a gift. Imagine never having to worry about the discomfort of paper cuts, skinned knees or going to the dentist. However, being immune to pain is also a curse, both physiologically and philosophically.
For most people, a diagnosis of congenital insensitivity to pain with anhidrosis (CIPA) is a death sentence, as the extremely rare disorder kills most while they are still toddlers.
But Georgia pre-teen Ashlyn Blocker, 12, has refused to let her condition ruin her life, competing in beauty pageants, playing in the school band and helping other children with her disease.
The Blocker Family
Tara and John Blocker said that they first noticed something was wrong with their little girl when she was eight months old.
Their daughter never cried when she was hungry or had diaper rash. She didn’t even seem to notice her eye was irritated, so the family took her to an eye doctor. ’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.’
Shortly after that first visit, they learned their daughter could feel no pain – an often fatal condition that affects under 100 people in the United States each year.
The years after her diagnosis were difficult, as Ashlyn would constantly injure herself, biting her hands, burning her fingers and self-inflicting other accidental wounds. The Blockers said they would have to tape up their daughter’s fingers to prevent her from harming herself.
Since the disorder affects the way signals travel from her central nervous system, Ashlyn has been working with researchers from the University of Florida to help learn more about pain. They hope studying Ashlyn might assist in creating new treatments for people with chronic pain.
Ashlyn also founded a summer camp for other children with CIPA with the help of her parents. ’Ashlyn had a dream one night that we started a camp for families like us. I knew instantly what I was meant to do,’ Mrs Blocker said.
Camp Painless but Hopeful
Together, they founded Camp Painless but Hopeful, where families with children suffering from CIPA can share experiences and bond with one another.
‘It was an amazing, amazing, unforgettable time for sure,’ Mrs 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.’
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