This Wisconsin woman beat a deadly blood disease. Now she thrives as a hiker, ultrarunner.

KAUKAUNA - Robin Grapa was nearing the end of a 100-mile foot race up and down the hills overlooking the Mississippi River near Dubuque, Iowa.

It was the afternoon of Oct. 19 and her GPS running watch indicated that she had run 100 miles already. But GPS devices and mileage on the ground don't always match in these kinds of competitions, and there were 4 miles to go to officially complete the race. 

The 40-year-old Kaukauna woman knew she was going to finish, so she took a moment to stop and record her feelings at that moment with a short video clip. She later posted a video that included that clip and other videos and photos from that day on YouTube. 

"I'm not going to do a video at the finish line, because I'm going to soak that in," Robin said, looking into the camera. "I'm still running, only because I'm pretending that I'm not hurting, and it's working. So I'm doing a little bit of running. Mostly walking. But I'm running a little bit. After a 100 miles. This is crazy."

There was both weariness and victory on her face and in her voice. She had 4 miles ahead of her to complete the Mines of Spain 100-mile Trail Race. They would be painful and hard, but nothing compared to what was behind her.

Not only had she run 96 (or more) miles, but she, in her past, already had walked across the country in an epic hike with her mother. She had become a long-haul trucker.

But most significantly, she had beaten a rare blood disease called aplastic anemia. It once sapped her strength so much that she could barely summon the strength to walk up a flight of stairs, much less run 100 miles at a stretch. It nearly took her life one dreadful day in the summer of 1998, and it's basically pushed her forward ever since.

'I gotta do something big, and I gotta do it now.'

In 2005, a doctor gave Robin the best news ever: She had beaten her disease, and she was in "complete remission."

She was 26 years old at the time and life with aplastic anemia had become normal. She was so used to the illness, the prospect of being free from the disease threw Robin off kilter.

Aplastic anemia shuts down a person's ability to produce blood cells. Generally, one or two people in a million get aplastic anemia, and only about 300 to 900 new cases are diagnosed each year in the United States. It causes a litany of ills, including fatigue, shortness of breath with minimal exertion and pale skin. At its most serious level, it can kill. 

Robin probably had the disease when she was in high school, although she didn't know it. She was a freshman at the University of Wisconsin-Stevens Point in 1997 when a doctor there first diagnosed her. She was treated with so many blood transfusions that she lost count, and between her freshman and sophomore years in college, she received an immunosuppressant drug treatment that essentially reset her body's blood making ability.

She wasn't exactly cured. The only way to cure aplastic anemia is to undergo a bone marrow transplant. But, in 2005, the doctor who had been monitoring her blood levels for years could not find any evidence of the disease. Her mind reeled as she walked from her doctor's office to her car. 

"That's when I said to myself, 'I gotta do something big. I've got this one life, man, and I gotta do something big, and I gotta do it now," she said.

'It was a great day!'

Her quest eventually led her to the finish line at the Mines of Spain 100-miler, held each fall in Iowa's Mines of Spain Recreation Area. She crossed it with her fists pumping in the air, her left hand holding the hiking poles commonly used by ultrarunners.

She was wearing a vibrant bright pink visor, a deep pink jacket, a light pink hydration vest and tights splashed with color. Her blond hair was pulled back in a ponytail. She did not look tired at all.

The video she posted on YouTube shows her hugging her husband, Adam Grapa, 41. Robin and Adam were married in 2001, and they have been together since they attended high school in Phillips. She also thanked her support crew, who included her parents, Patty and Keith Laatsch of Phillips.

At the end of the video, she held up the monster belt buckle awarded to race finishers.

"It was a great day!" Robin said. "All right. I think I'm going to eat, drink a beer. Ooh, I want that Corona. That's what I want."

It's completely in character that Robin should post a YouTube video about her first 100-mile race. She used social media to get the word out about aplastic anemia and her fundraising efforts, including a blog called "So Many Miles." She continued posting after the hike. She likes taking photos on her various adventures, and her fun and funny posts as @_toots_magoots_ on Instagram are peppered with photos of trucks, nature and running.

The first 'something big' — walking across America.

"I came up with a lot of crazy ideas," Robin said about her early thoughts about doing "something big" back in 2005,.

She thought about joining the Air Force. "They turned me away because of my weight," Robin said.

Robin had "gained a bunch of weight in college," she said, partly because of steroids that were part of the aplastic anemia treatment.

"By the time I graduated, I was pushing 230 pounds. I was a big girl at that point."

She had other ideas for her big thing, too. "I told my mom I was going to take one of those snow tubes (to float on) down the Mississippi River," Robin remembers. "She was like, 'You can't do that. That's too dangerous.'"

One evening Robin and Adam were watching TV together, and Adam "made some joke about walking to California," Robin said. "I Googled 'walk across the country'. And I learned about the American Discovery Trail."

The American Discovery Trail is actually a system of more than 6,800 miles of multiuse trails that stretch from Delaware to California. And Robin decided she wanted to hike it.

"I started researching that and became obsessed with it," she said.

This was happening at the same time Robin was looking for ways to raise money for the Aplastic Anemia & MDS International Foundation. She was working at an Oshkosh company that produces promotional products, and on her breaks she would research both the fundraising and cross-country hiking projects. She just melded the two projects.

"I wanted to walk across the country and talk about (aplastic anemia)," Robin said. "So if somebody else was diagnosed with it, at least maybe they have heard of it. And then it's not quite so scary."

'It was a parent's worst nightmare.'

Shortly after Robin came up with the idea to hike the American Discovery Trail, she asked her mother, Patty Laatsch, to join her on the adventure.

Patty immediately said yes. It was a crazy idea, she thought, but not as loopy as floating down the Mississippi, "and at least we wouldn't be in the water and drown right?," Patty said.

But Patty had her own special reason for agreeing to hike for about nine months with her daughter.

"That's kind of emotional," Patty said. "That came from the day she almost died in the hospital."

Patty was referring to the most serious health crisis Robin faced throughout her illness.

It was the summer of 1998 and Robin was 19 years old. She had completed her immunosuppressant drug treatment and was recovering at her parents' home in Phillips. Doctors had ordered her to rest inside for the weeks after that treatment because her entire immune system was essentially shut down, and it was rebuilding itself.

She was feeling ill one night and went to sleep on a couch in the living room. She doesn't remember much of what happened next, but her entire body went into seizures and she stopped breathing.

"I remember my body tensing up and my fingers curling, and I felt scared," she said.

Doctors later determined that the episode was caused by a drug imbalance, and for a period of time, her life was in jeopardy.

Her father, Keith Laatsch, found her writhing on the couch that night, her lips blue.

"It was like a horror story," Keith remembers now. "We had no idea what was going on. It was a parent's worst nightmare. It was insane."

EMTs responded and determined quickly that Robin was in deep trouble. A medivac helicopter rushed her to St. Joseph's Hospital in Marshfield, now known as Marshfield Medical Center. She was given last rites in the hospital, as doctors continued to stabilize her with new medications.

Robin doesn't remember any of this. "When I work up, I wanted to be dead. I had these horrific headaches. It was pretty scary," she said. "That freaked me out."

It was a nightmare for her parents, too. At one point, Patty could not be in the intensive care unit room with her daughter. She simply could not face the fact that Robin might die. 

"My husband stayed with her," Patty remembers. "But I had to leave. I went into the waiting room. ... And I prayed to God, to give her one more day. I told God I would do anything he asked if he would give her one more day. And I just knew I would know what to do when he asked."

A doctor found Patty in the waiting room and told her she could come back into the room. Robin had survived.

"I never told anybody about that, that I would do anything (God) ever asked," Patty said.

When Robin asked her to join the cross-country hike, Patty believed that this was God answering her prayer. And to this day you could never convince her otherwise.

The two had a tremendous time during that nine-month ramble across America. 

"I feel so lucky to have shared that time with my mom," Robin said. "I mean, we shared a tent, slept together side by side, walked together. We fought, we laughed, we had so much fun. It was great. ... I feel very, very lucky to have had that experience with my mom."

Patty feels the same way. "Walking together, it was like sometimes we didn't even have to ask each other what we wanted," she said. "We'd just know."

Then 'something big' meant a big rig.

Robin didn't want to stop after she and Patty completed that first epic walk. But there was real life. She studied graphic design at UW-Stevens Point and had been working for years as a graphic designer in Oshkosh. She took a leave of absence from that job during the hike, and returned to it after it was completed.

She had lost weight through training before and during her hike. She wanted to keep it off. She wanted to maintain fitness. She started kickboxing classes. She started running. She went off on rambling hikes during the weekend.

Adam, on the other hand, was struggling. While Robin was preparing for and doing the walk across America, he was training to be an over-the-road trucker. And he quickly found that he wasn't suited for the job. Most notably, he found his anxiety and anger levels rise when problems would crop up beyond his control. And problems always crop up beyond a driver's control in trucking. He had to leave it for his own piece of mind.

As Robin was hiking, he worked a variety of jobs and moved back home with his mother in Phillips to cut costs and he worked a number of odd jobs to help make ends meet. When Robin returned, his crisis in careers continued. 

He and Robin came up with a plan. They would save money for another epic hike. Robin would backpack the Pacific Coast Trail, and Adam would support her. Sometimes he would hike with her, sometimes he would camp on his own, sometimes he would stay at a hotel.

After they returned from that trip, Robin entered a truck driving school and she and Adam became a trucking team. Robin was finding her desk-bound job a bit confining, so she was open to the adventure over-the-road trucking can offer.

The team driving worked for a time, but Adam still found the stresses of the job overwhelmed him. He had to leave trucking once again. Today he is a drivers' education instructor, and says he feels grounded and happy.

Robin liked trucking, so she continued as a solo driver. But she still wanted to do "big" things. As she entered her late 30s, she continued to think about what she could do that would remind her of the gratitude she has for the life she can live.

She decided she wanted to run 100 miles for her 40th birthday.

She grabs life and does all she can with it

Running 100 miles is hard, really hard, for anybody. But it can be especially difficult for an over-the-road trucker who is driving, and sitting stationary in a seat, for 14 hours a day.

Robin, of course, had a plan. She would run and walk whenever possible. Sometimes that meant doing laps around truck stop properties. But most often, she found some running routes near wherever she stopped. Sometimes, when she got most desperate, she jumped rope in the parking lot in front of her rig.

She also came up with what she called her 50-50, 100-100 strategy to get her body accustomed to the ultramarathon grind. That meant she would work her way up with ultramarathons in increasing distances: 31 miles, 50 miles, 62 miles and 100 miles.

She turned 40 earlier in the year, but the Mines of Spain 100-mile race was still the birthday run.

"It was all really hard for her," Adam said, referring to the constant training required, in addition to completing the actual races. "And to be honest, I was kind of shocked she did so well (in the Mines of Spain 100-miler). I was really concerned for her (at mile 80)."

But he knows, as do Patty and Keith, no one should ever count Robin out.

Patty worries, sometimes. Could these grueling physical tests be taking a toll on Robin's body? Could they cause a recurrence of the aplastic anemia? But she lets those questions flit by; there is no way to determine their answers. And seeing Robin thrive in events such as the Mines of Spain overwhelms those feelings of anxiety. 

"I'm just so proud of her," Patty said. "She was going to celebrate her life. She was going to grab that life and do all she could with it. And she continues to celebrate her life, and tries to put on a good example for other people."

 Adam feels much the same. "Back when she was in high school, it seemed like she thought of herself as incredibly average," he said. "But now she's got a new lease on life."

The lesson Robin teaches is basic. "We're not guaranteed tomorrow, so you might as well do it today," Keith said. "It's pretty simple."

Robin isn't sure what's next. She still yearns to go for long, epic hikes, and there are more, certainly, in her future.

"I think I might want to volunteer more," particularly at ultramarathons, she said. A pacer helped her get through the Mines of Spain 100-miler, and she'd like to help someone else that way.

"I've been helped so much by volunteers," she said. "I think I might want to experience a race from that side."

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Contact Keith Uhlig at 715-845-0651 or kuhlig@gannett.com. Follow him at @UhligK on Twitter and Instagram or on Facebook.