Meet the Girl Who Feels No Pain

JEFF RIEDEL/CONTOUR BY GETTY IMAGES

Ashlyn’s rare genetic condition may seem like a superpower—until you realize that hurting can save your life.

Ashlyn Blocker was in her kitchen in Patterson, GA, stirring ramen noodles, when the spoon slipped from her hand and dropped into the pot of boiling water.Without thinking, the 13-year-old reached her right hand in to retrieve it, then took her hand out of the water and stood looking at it. She walked to the sink and ran cold water over all her faded white scars, then called to her mom, “I just put my fingers in!” Her mother, Tara Blocker, dropped the clothes she was folding and rushed to her daughter’s side. “Oh, my Lord!” she said—then she got some ice and gently pressed it against her daughter’s hand, relieved that the burn wasn’t worse.

Ashlyn behaves like any 13-year-old girl, brushing her hair, dancing around, and jumping on her bed. She also runs through the house without regard for her body as her parents plead with her to stop. When she makes an egg sandwich in the skillet, she presses her hands onto the bread as Tara taught her, to make sure it is cool before she puts it in her mouth. Ashlyn can feel warmth and coolness, but not the more extreme temperatures that would cause anyone else to recoil in pain.

Tara and Ashlyn’s father, John, weren’t completely comfortable leaving her alone in the kitchen, but it was something they felt they had to do so she could have some independence. There was good reason for their worries. There had been so many incidents over the years: There was the time Ashlyn burned the flesh off the palms of her hands when she was 2. John was using a pressure-washer in the driveway and left it running; in the moments that he had his eyes off her, Ashlyn walked over and gripped the muffler. When she lifted her hands, the skin was seared away. There was the one about the fire ants that swarmed over her in the backyard, biting her more than a hundred times while she looked at them and yelled: “Bugs! Bugs!” There was the time she broke her ankle and ran around on it for two days before her parents realized something was wrong.

She’s Not Superman

Ashlyn wears headbands and flip-flops most days, and also black-framed prescription glasses and bracelets that she makes with beads she keeps in an old pickle jar. When she smiles, you can see her plastic braces, which she wears because the metal ones might cut her tongue and gums without her noticing. She has a medical-identification tag that she clips to a silicone wristband—she has eight in different colors, which she mixes and matches with her wardrobe. On the back of the tag it reads, “Cannot feel pain—sweats minimally.”

At school, she was once asked if she was Superman. Could she feel a punch to the face? Could she walk across burning coals as if she were walking on grass? Would it hurt if she were stabbed in the arm? The answers are no, no, yes, no. She can feel pressure and texture. She can feel a hug or a handshake. She could feel her best friend, Katie, painting her toenails. “People don’t get me!” she explains. “Everyone in my class asks me about it, and I say, ‘I can feel pressure, but I can’t feel pain.’ Pain! I cannot feel it! I always have to explain that to them.”

Finding the Answer

When she was born, Ashlyn didn’t cry. When she developed terrible diaper rash, with skin so raw that it made Tara wince to even wash her, she didn’t cry either. Tara says, “The doctors dismissed it, but we’re thinking, ‘What’s going on?’”

When Ashlyn was 6 months old, a puzzled doctor referred her family to the Nemours Children’s Clinic in Jacksonville, FL. It took a while to get an appointment, and before they made it to Jacksonville, Ashlyn rubbed her nose until it was raw and almost chewed off part of her tongue with her new teeth.

At the clinic, doctors drew blood and took scans of Ashlyn’s brain and spine, but the tests were inconclusive. Over the next 18 months, there were more tests. When the doctor finally gave his diagnosis, Tara was afraid she would forget the words, so she asked him to write them down. The doctor took out a business card and wrote on the back: “Congenital insensitivity to pain.”

“The doctor told us we were the only ones out there,” Tara said, “that it was so rare. He said to keep an eye on her, and that they didn’t know much about it and couldn’t really be of any help. It was kinda like, ‘Good luck!’”

The Blockers got rid of all their furniture with sharp corners. They laid down the softest carpet they could find. They didn’t let Ashlyn roller-skate. They didn’t let her ride a bike. They wrapped her arms in layers of gauze to keep her from rubbing them raw.

A Search for a Cause

Finally, the family got in touch with scientists who could help them understand the condition. Dr. Roland Staud, a professor of medicine at the University of Florida, has been conducting research into chronic pain. Staud tested Ashlyn’s genetic material and found two mutations in her SCN9A gene. That same gene, mutated in a different way, can mean severe-pain and chronic-pain syndromes. If he could understand how the mutation worked in Ashlyn, Staud theorized, he might be able to turn it off in people who suffer from chronic pain.

“Ashlyn’s life story offers an amazing snapshot of how complicated a life can get without the guidance of pain,” Staud says. “Pain is a gift, and she doesn’t have it.” Staud wonders what Ashlyn will be like as she becomes an older teenager, if she will begin to disobey her parents, and what the implications might be for her health. “We know very little about this in the long term,” he says. “How will she be emotionally?” We sometimes experience emotional pain physically—Staud used the example of heartbreak, how the end of a romance can cause physical pain—and he wondered if the relationship between the body and emotions also goes the other way: If a person can’t feel physical pain, is her emotional development somehow stunted?

Ashlyn does cry. She cried when her dog ran away earlier this year, curling up with her mom and dad in their bed. “She can feel empathy,” Tara says. “She does. I don’t know if they found that in their research. But I know she does, in my heart.”

A Camp for the Painless

One Saturday morning last year, Ashlyn awoke past noon and announced to her mother, “I had a dream.” Tara expected her to start telling some fantastical story, but instead Ashlyn said, “In the dream, we started a camp for kids like me.” She had a vivid image of children who hadn’t known anyone else like them running around together. Which is how Camp Painless But Hopeful got started.

Eight families signed up, and the camp was held in early November, when the weather in Georgia was more agreeable for children who don’t sweat much. (Humans need to sweat in order to keep their bodies cool—so without sweating, it’s easy to overheat.) Roberto Salazar, an 11-year-old from Indianapolis, spends most of the year confined to an

air-conditioned home because he doesn’t sweat at all, and his body temperature could rise quickly and dangerously. When he showed up at camp, Roberto was getting around on a motorized scooter. He gave the other children rides for fun.

The first night at camp, Ashlyn made s’mores and went on a hayride. She rode the zip line. She danced. She gravitated to the little girls. She helped them decorate steppingstones with jewels and beads, little concrete slabs that will stay on the grounds as a part of the camp’s legacy project. “It was just awesome to meet people just like me,” Ashlyn said.

Different But Normal

Sometimes it seems as if Ashlyn’s entire town is a network of external pain receptors, feeling for hazards that might injure the girl who feels no pain. “One time she cut her foot,” says Michael Carter, her band teacher at Pierce County Middle School. “I don’t know if it was the music stand that came down on her, but there was blood on her foot.” You can sense when talking to many of the people around Patterson that Ashlyn is a strange and special presence in their lives, that they are proud of her and worried for her. “Middle school can be traumatic for some kids,” Carter said, “but I think she’s kind of tackled this thing. She says, ‘This is who I am.’ She’ll tell you about it. She loves to hug—she’s a joyful person.”

Her art teacher, Jane Callahan, talks about her imagination, how Ashlyn sees things a little differently than the children around her. She has a good eye for detail. Her homeroom teacher, Corey Lesseig, explains how important it is that Ashlyn lives in a place like Patterson, where everyone knows her and understands her and she can be comfortable being herself. “You wonder as she gets older how all that’s going to be,” he says.

What Lies Ahead

Watching Ashlyn heave her backpack onto her back and walk down the hall, seeing her at a weeknight football game or painting in art class or playing her clarinet in band, it’s hard to think of her as one of a handful of people in the world whose body might contain secrets that could unlock the mystery of pain itself. Staud says that doctors have only scratched the surface of what they could learn from Ashlyn. She will most likely be tested for years to come. With each day, she becomes that much more aware of the world, that much more cognizant of what she has to look out for and anticipate. Most things become easier, and the possibilities for her life become greater. But it’s not possible to imagine all the threats in advance, so Ashlyn has to enlist everyone around her to help her watch out for danger.

“She’s our normal,” her mother says.

 

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