The American River coursed in the night, the Sierra Nevada mountain range guiding its way.
Rafting is a thing here. So is gold.
Shawn Pelon, 32, watched as one of the teens from his group sat by himself in the fading Northern California twilight.
They had all just finished supper. They’d be there overnight, three counselors and nine campers.
Pelon couldn’t help but worry. A teen had come ill-prepared. No sleeping bag. Clothes unsuited for the outdoors.
The boy had been apologetic. Life at home, life in general, had grown confusing and uncertain.
Maybe if he’d done things in his life differently. Maybe if he had just been different.
“This kid has a bleeding disorder,” Pelon said. “He is dealing with that.”
Pelon spoke not just as a nurse, but as a fellow person with hemophilia. He knows the struggles.
“He’s fine,” Pelon said. “He needed support.”
The particular group of young adventurers that had united in the rugged California wilderness had done so under a common banner: bleeding disorders. They ventured there for the Hemophilia Foundation of Michigan’s Eagle Expedition.
A slip or a fall, a break, a bleed, has grave implications in such a place. The terrain is unforgiving.
But together, the campers would contend.
That’s the lesson.
With the right help, the right team, the right mindset, they would thrive.
Pelon, a registered nurse at Spectrum Health Zeeland Community Hospital, served as volunteer registered nurse for the hemophiliac foundation’s annual trip, one of many such expeditions the organization arranges each year.
Pelon smiled as he described the trip: “Every mother’s nightmare.”
More so for mothers of those with bleeding disorders.
On the week-long trip, Pelon’s job seemed simple enough: make sure his charges stayed safe on their hiking, rafting and climbing excursions.
The explorers learned to manage their bleeding disorders in an adventure setting. Pelon provided medical assistance and tried to help the campers pack smartly.
“But really, it’s about teaching them how to care for themselves and to enjoy the experience without limitation,” he said.
Pelon has the bona fides.
The Zeeland, Michigan, native has been involved with the hemophilia foundation since age 5. He started as a camper and later became a counselor and lifeguard.
Now tall, fit and bespectacled, Pelon has a Clark Kent sort of vibe. To elaborate on a point, he’ll innocently use hokey idioms like, “Bees knees,” or, “If I’m lost, then we’re up a creek.”
Doctors diagnosed him with hemophilia A as an infant. The inherited condition can cause uncontrolled bleeding that, left untreated, becomes dangerous even in the most innocuous setting.
Pelon has a defect in his X chromosome, inherited from his mother, a carrier. She got the gene from her father, who had hemophilia and died in 1986 at age 57. Pelon’s grandfather also had AIDS. Blood products he received had been contaminated.
That was also about the time the world first heard of Ryan White, one of the first children with hemophilia who had been diagnosed with AIDS following a blood transfusion.
About 1 in 5,000 newborn boys have hemophilia A, caused by a defect in a gene that codes for a blood-clotting protein, called coagulation factor VIII.
In such cases, uncontrolled bleeds in knees, arms, ankles and other joints can cause pressure, pain and permanent injury. These individuals can also experience pain in a target joint, a point of repeated bleeds tied to known or unknown causes.
In Pelon’s case, it’s his left hip.
He has a moderate form of hemophilia, however, which means his body makes some factor VIII protein. Just not enough.
As a child, he had to take synthetic factor VIII intravenous injections as needed. Like that time he inadvertently grabbed the business end of a knife. Or when his brother stepped on his “really big blood blister.”
His condition led him to miss out on some experiences.
“I would have loved to do wrestling,” said Pelon, a 2004 graduate of Zeeland East High School. “I would have loved to do football. Very frustrating.”
By age 16, he had become quite proficient at administering his own factor VIII replacement at home. In his younger years, he took the clotting agent as needed.
“I was pretty accident-prone,” he said. “I always had bruises all over.”
These experiences sparked an early interest in the health care field. They steered him toward careers and activities that would push his limits and grow his knowledge.
Pelon earned his bachelor’s degree in clinical exercise science at Grand Valley State University and worked four years at a hospital laboratory, processing specimens. He also worked as a personal fitness trainer and did a stint at a nutrition store.
After he logged a good many hours as a working adult, he began to consider new career ideas.
A job in emergency services sounded interesting. But then something else caught his attention. It came up during a series of conversations with a co-worker.
He clearly recalls his friend’s take on nursing: “This is the bee’s knees, man. This is where you want to be. I think you would be really good at it.”
When he made the decision to go back to college to pursue the nursing degree, he and his young family had just gotten started. At 26, he chose to begin pre-requisites and, at 29, he decided to go full time.
He’d met his wife, Maria Vander Wilp, at his high school graduation open house. She had heard about Pelon through friends and she had looked forward to meeting him. He didn’t disappoint. She remembers him as an especially attentive listener.
Today, Pelon and Maria are parents to Malia, 5, and Evie, 1.
Pelon’s condition is dormant in each girl, on one of two X chromosomes. If they have boys, it’s a tossup which X makes its mark.
Maria, who worked at Macatawa Bank’s corporate offices until transitioning to full-time mom, said it only made sense for Pelon to pursue a nursing career.
“It’s a decision we were being led to make. I think the only way to do that is to fully commit,” she said. “He’s so strong that he won’t ever have a negative outlook on anything. And I admire him so much for that.”
Because he already had a bachelor’s degree, it took just 15 months for Pelon to complete his nursing degree.
In 2016, shortly after he put the finishing touches on his nursing degree, Zeeland Community Hospital hired him as a nurse.
Due to modern factor VIII medications, many people with hemophilia live physically active lives. Pelon calls it the “nectar of life.”
“Without this medication, individuals with bleeding disorders would and do suffer debilitating chronic pain or death. This pain is prevalent in many hemophiliacs today, especially true to those that grew up without easy and affordable access to safe factor VIII replacement,” Pelon said.
“Hemophiliacs whom I have known for years have died because of what began as a minor head/brain bleed (unknown to them at the time) was left untreated.”
Pelon still must regularly inject himself with factor VIII treatment. He takes 4,500 units of it every third day, as a preventive course.
When Pelon began working as a nurse, he and Zeeland Community Hospital nursing manager Rachel Spek started to learn more about each other.
To Spek, a 36-year employee at the hospital, something about Pelon seemed familiar.
“We had a child that would come in for factor, and it was a specific child, and we had a whole little kit created just for him,” Spek said, recalling a patient from years back. “When his mother would bring him in, we would give him factor to ensure his blood would clot properly.
“After a period of time, we didn’t see that little boy anymore, and I always wondered what happened to him,” Spek recalled.
When Pelon mentioned he had been treated for hemophilia at Zeeland Community Hospital, Spek put two and two together.
“I believe Shawn was that little boy,” Spek said. “It was very heartwarming for me to see that the child I had once cared for blossomed into this wonderful caring person, who was encouraging and giving back to others as a nurse.
“I think believe (hemophilia) is an important piece of who he is,” Spek said. “He understands chronic disease and how that affected his life and particularly the lives of children. The care he received makes giving back especially important to Shawn and shapes how he cares for those that cross his path.”
The expedition out West is one of a handful of outdoor programs the Hemophilia Foundation of Michigan operates under the Eagle Journeys umbrella. More than 200 children participate in the foundation’s various annual events.
Some are as young as 6. Pelon’s adventurers included ages 16 and older.
They went kayaking and whitewater rafting. They slept under the western stars.
But not without risk. The expeditioners had to manage their bleeding disorders in an adventure setting, all while learning teamwork and leadership skills.
As with all the foundation’s expeditions, those who felt alone would quickly find strength in unity.
But there are safety nets, too—like the nurse on hand.
When Anthony Stevens, 33, assistant director of the Hemophilia Foundation’s Camp Bold Eagle, began to look for a nurse to accompany the group on the summer trip, he immediately thought of Pelon.
At age 16, Stevens worked as a counselor in training at the camp in Muskegon County, Michigan.
Pelon had served there, too. They’d been friends.
“We thought, ‘Hey, wait a minute. Didn’t Shawn become a nurse?’” Stevens recalled.
And that’s how Pelon found himself keeping an eye on kids in the California woods—kids not much different than he’d been as a teen.
Stevens knew he could count on him.
“If I needed advice in a certain situation, whether it was dangerous or not, he had my back,” Stevens said.
Pelon had the kids covered, too.
That evening by the river camp, he had encouraged the teen to keep that adventurous spirit.
It had been no accident, perhaps, that their group set camp just downstream from Sutter’s Mill in Coloma, California.
It’s the spot where prospectors discovered gold precisely 170 summers before.
Pelon remembers telling the boy to never give up. Not ever.
“You can achieve more,” he had told him. “You have more to offer. You just have to try.”