Ashley Kurpiel is full of promise

Ashley Kurpiel March 2018 Photo by Marie Thomas

Ashley Kurpiel March 2018
Photo by Marie Thomas

Beneath a patch of crystalline clouds off the southern coast of California, Ashley Kurpiel surfs for the first time.

It’s August 28, 2010, and she’s been attending the Amputee Coalition National Conference in Irvine, California. She traveled there, with her cropped brown hair and her sleeveless sundresses and her one (left) arm, to meet other amputees and connect with one another.

When one of the conference speakers announced he’d be taking attendees surfing that weekend, Ashley didn’t think she’d be joining them. She decided she’d just be the “camera girl” instead. She’d love to go surfing, but she’s not like the other amputees. In fact, she’s not like anyone else in the world.

Ashley is the only person — out of more than 7 billion human beings across the globe — to be an amputee and to have fibrodysplasia ossificans progressiva (FOP). The disorder alone puts her in the minority; there are fewer than 800 known cases worldwide. FOP, also called Stone Man Syndrome, ossifies (turns to bone) a person’s muscle and connective tissue. Ossification and mobility loss occur gradually throughout the person’s life, but if she hurts herself, the process accelerates.

It’s the reason Ashley wears a flip-flop with a five-inch platform on her right foot. It’s the reason she’s missing her right arm. And it’s the reason she’s not planning on paddling out into the ocean.

So after the talk, Ashley the future camera girl greets the speaker and, never a shy talker, ends up explaining her condition.

Ashley and fellow amputee, Shawnie Whitaker

Ashley and fellow amputee, Shawnie Whitaker, head to the waves.

“I’m telling him my story,” Ashley remembers, “and he’s like, ‘We’re getting you out there.’ And I can’t picture it. Because I know I can’t stand. I can’t picture any other way.”

But there is another way. It involves three men helping her into a tight wetsuit over the course of Saturday afternoon. By the time everyone else heads back, Ashley is ready, finally, to begin.

So now it’s late afternoon, the summer-weary sun is gleaming on San Onofre Beach, and Ashley Kurpiel is riding a surfboard for the first time.

She lies on her right side, head facing toward the horizon, with a veteran surfer straddling the board with her. They’re reaching into the frigid Pacific waters, then turning. And suddenly, she’s made it back to shore.

Long before Ashley ever visited the West Coast, her rare medical condition provided her and her family with countless other opportunities, which began as fears for her life.

Ashley’s parents, Fred and Carol, moved to Peachtree City in 1984 after adopting her brother, Derek, and her, a seemingly healthy baby. At the time, they had no idea Ashley had any sort of illness.

Then, when she was three years old, something went wrong. Carol noticed Ashley’s back swelling and growing hot to the touch. Doctors told Ashley’s parents she had a cancer.

A 1992 Kurpiel family photo.

A 1992 Kurpiel family photo.

After they began surgery to remove what looked like a cancerous tumor, they noticed the tumor seemed to be spreading. They would need to amputate Ashley’s entire right shoulder and arm.

It was only six months after the amputation that the doctors realized Ashley’s problem hadn’t been cancer at all. FOP often appears cancerous because it causes tumor-like lesions that spread through the body. And because FOP was less well-known thirty years ago, misdiagnoses were common.

The FOP diagnosis, however, turned out to be much more diabolical than cancer. The doctors told Carol the disorder snuffed out life.

“It was scary, naturally,” Carol says. “I would lie if I said it wasn’t. I’m just a mom with a child. They said, ‘Take her home and enjoy her because she’ll probably be gone by the time she’s ten.’”

Ashley and her sister Emily.

Ashley and her sister Emily.

So the Kurpiels adopted another daughter, Emily, and continued to raise three children while hoping for a cure for Ashley.

As a 36-year-old today, Ashley chooses not to be bitter about her disease, or even about the totally unnecessary loss of her arm. She talks about her condition with the firm tone and the blunt honesty of a woman who’s learned to embrace everything she’s experienced.

“I’m not, obviously, mad about what happened,” Ashley says.

“I can’t change it, you know, so I just live with these issues I have and make the best of it. But I wouldn’t change it even if I could. If I could go back and change anything, I don’t think I would.”

Is she sure? 

“I mean,” she says, “I met the Dalai Lama.”

She did, in 2007. A friend invited Ashley and her mother to hear the 14th Dalai Lama, Tenzin Gyatso, speak in Atlanta. After he left the stage, he headed for the door, turned back around, and walked straight up to Ashley’s table. She says he looked past her at her mother to ask what had happened to the one-armed woman sitting in front of him.

“And I’m like, screw that!” Ashley says. (She likes to tell her own story.) “And I started talking.”
After listening to her, the Dalai Lama touched his forehead to hers, a blessing and “spiritual kiss” in Tibetan Buddhism.

“Everybody was crying at our table,” Ashley says.

Carol interjects, laughing: “Even security was crying.”

“He kept thanking me,” Ashley continues. “His English is not that great, but he just kept thanking me.”

It’s quirky and inspiring opportunities like these that living with FOP, and advocating for the FOP community, has offered Ashley throughout her life.

Ashley with her mom Carol and Dr. Kaplan.

Ashley with her mom Carol and Dr. Kaplan.

Ashley first connected with the FOP community — and her mother realized she had a chance at life past adolescence — when Carol discovered Jeannie Peeper, the founder of the International Fibrodysplasia Ossificans Progressiva Association (IFOPA). Peeper had FOP and, at the time, was in her mid-thirties. After they reached out to Peeper and her organization, the Kurpiels were able to connect for the first time with eight other families in the U.S. who also understood what it was like to live with FOP.

Ashley, a shy elementary schooler at the time, finally had companions with similar experiences.

“I’m so excited I have FOP,”  she remembers thinking. “I have friends!”

Since then, she has shared that sense of community with others, traveling to events, even testifying before Congress in 2009, and advocating for the FOP community worldwide.

In October 2013, Ashley got a phone call from the producer of a Russian talk show. She invited Ashley to come meet Olesya Radushko, a woman around Ashley’s age with FOP, on air. That was Thursday afternoon, and by the next Wednesday night, Ashley, her mother, and her best friend David were on a plane to Moscow.

In Moscow with friend David Paskowish

In Moscow with friend David Paskowish

“Because of that one show, it opened the FOP community in Russia,” Ashley says. “Now they have groups every year, they get together and have a conference. Now Olesya has friends with this that she can communicate with.”

At home in Georgia, Ashley has been instrumental in making Fayette County a more handicap-accessible community. After being told she couldn’t graduate from Starr’s Mill High School because she hadn’t completed PE class, Ashley worked with the school to promote accessibility for students like her.

When she graduated (without taking PE), Ashley walked through the school with administrators to show them what they could change to comply with ADA standards and accommodate all types of students.

Ashley and her mother also worked with former governor Sonny Perdue to get golf cart handicap stickers. Ashley may not be able to drive, but she can take herself around the city (and to poker nights with friends) on a golf cart.

A high schooler at the time, Ashley was not the talker she is now. In fact, media would turn her down for interviews because she couldn’t speak up. Now she’s found her voice and appeared in the Daily Mail, ABC News, and, of course, even a Russian talk show.

Some of her opportunities to share her story come not from her FOP, but from her involvement in the amputee community. Unlike the FOP network, the amputee community is much larger, and much more mobile.

“It’s amazing to kind of be in both sides of it,” Ashley says. “They both made me who I am for sure.”

But like other members of the FOP community, Ashley has become less mobile as she’s grown. Her remaining arm is latched to her side, and in 2006, a car accident injured her left leg, which is the reason she wears her signature black platform flip-flop. She embraces her footwear, though: Her nickname on Facebook is “Ashley FlipFlop Kurpiel.”

A typical week for Ashley, who lives with her parents and grandmother, involves getting together with friends and picking up her niece and nephew from the bus stop on Wednesday afternoons. Ashley’s sister, Emily Henrich, says 7-year-old Mia and 4-year-old Oliver love to see their aunt’s face at the end of the school day.

“They honestly look forward to it every single week,” Emily says. “They think the world of her.”

Even during the school day, what Mia and Oliver have learned from their aunt lingers in their minds.

“My 7-year-old is really good about seeing someone being left out and trying to be their friend,” Emily says. “Ashley’s really been able to show them that.”

Ashley thrives on the routine in her family life, but this year she’s beginning something new.

At a FOP gathering in December, Ashley learned about a new drug being developed to treat the disorder. When she begins trials, she will be the first patient to test the drug, which will involve monthly visits to the Mayo Clinic in Minnesota for a year.

“I’m super excited to be a part of this history,” Ashley says. “I never thought we had hope. I was crying happy tears in December, just knowing I get to be part of this, and this is going to be my future.”

Her mother adds: “But what she’s not telling you is she’s doing it for the children. She’s doing it for the kids.”

Ashley and niece Mia

Ashley and niece Mia

Ashley admits becoming the test subject for a new drug scares her, but searching for a cure isn’t just for her own benefit, or even just for kids with FOP.

“It’s amazing, all this money pouring into this rare disease, but once they cure it, once they find this cure for FOP, it’s going to be a domino effect to help osteoporosis, brittle bone disease, all these other bone related conditions because they’re all linked somehow,” Ashley says.

While Ashley and her family continue to hope for a cure for FOP, Carol chooses to see Ashley’s condition “like a privilege, not a disaster.”

Fayette Woman’s 2017 Mother of the Year, Carol says friends have asked her if what happened to Ashley as a child left her frustrated, or angry at God. But while she was upset for a time, she knows Ashley has the strength to overcome. In fact, Carol says she’s privileged to take care of someone so precious.

“You just have to say: Eight hundred in the whole world? And I have one? Turn it around, and it’s like having the Hope Diamond.”

This doesn’t mean Ashley’s unique condition doesn’t come with unique challenges. Although she’s as independent as she can be, she wishes sometimes she could return small gestures like opening doors. But over time, she’s learned that not all assistance is physical.

A few years ago, Ashley sat around a bonfire with one of her friends, a quadriplegic. When wind scuttled around the fire, it began blowing on her eyes, which welled up as tears began tumbling down one cheek. From his wheelchair, her friend asked her to lean closer.

“He’s like, ‘Hey, Ash, come over here,’” Ashley says. “And I lean in, and he takes the back of his finger and wipes the tear from my eye. And he looks at me with tears in his eyes, and he’s like, ‘You don’t know what that meant for me to help you.’ And I’m like, ‘If anybody understands this, I understand it.’”

Ashley’s eyes welled up, again, but this time not from the wind. They both cried together about the small blessings of helping others, which sometimes mean wiping away a stray tear, and other times mean giving others the opportunity to share love.

“It’s been a good life,” Ashley concludes. “It’s not over yet.”

 

March 7, 2018
March 7, 2018

RELATED POSTS