Robb Freed

Robb Freed poses with his bicycle, “Rowan,” in downtown Ottumwa. Freed has taken two cross-country bicycling trips to raise awareness for epidermolysis bullosa, a disease which took the life of his 13-month-old son.

OTTUMWA — Robb Freed wasn’t sure what to do when he lost his 13-month-old son to a disease he didn’t even know existed.

“I had so much anger. So much anger,” Freed said. “You, as a human being, are made to be able to bury your parents. Maybe a brother or sister. You are wired to cope with that. It’s part of life. You are not wired to lose your kids.”

Freed’s son, Drake E., had been born with a rare genetic condition called epidermolysis bullosa, or EB. This disease, which only occurs in about one out of every 20,000 births, causes open sores to develop on a patient’s skin. Those afflicted with the condition require their bandages to be changed several times a day, which can be an excruciating process. There is no cure, and complications that arise from the disease can be fatal.

“After my son passed away, there were long years of really doing nothing,” Freed said. “Just living a blah kind of life. Very selfish, not good to my family, not good to my friends. So I started bicycling every single day. That turned out to be my avenue where I could figure things out.”

Bicycling soon became an addiction for Freed. Along with EB, it was the only thing he wanted to talk about. After a while, a friend suggested that Freed combine his passions and ride his bike to generate awareness for the disease.

This began Freed’s solo cross-country bicycle ride, “The Big Ride for EB.”

The first Big Ride began last year, near Freed’s home in Glen Falls, New York. It ended up taking 225 days and covered more than 8,600 miles. Unlike other cross-country fundraising drives, Freed’s ride is really a double cross-country; after riding from New York to Seattle, he simply turned around and rode all the way to Florida, then up the coast and back to New York.

“I got back in November last year and there were no plans or ideas of doing it this year,” Freed said. “I was done. I was cooked. I never wanted to see a bicycle again. When I got back, I had a hard time functioning at home. I picked up a little bartending here and there. But I just rested, really.”

It wasn’t long before Freed decided to get back on the road. He departed from Yorktown, Virginia in April of this year, and rode the Trans-America Trail to Astoria, Oregon. Last week, he rolled through Ottumwa on his 175th day, headed back east. He was torn between finishing his trip in New York, which would take another month, or Florida, which would take another month and a half.

On an average day, Freed rides anywhere between 50-70 miles. He wakes up and gets the day started as early as possible, and camps or stays in hotels, whichever is convenient. Everything he needs he carries on his bike, which he calls “Rowan.” With the combined weight of the frame, tires, bags, and equipment, the bike weighs about 50 pounds on its own.

While he mostly improvised his route last year, this year Freed rode the Trans-America Trail, a cross-country route stitched together from secondary roads and cycling trails. Iowa, which isn’t on the trail, was something of a detour. He spent some time at a hospital in Des Moines during the first Big Ride, after he fell and broke two ribs, and wanted to stop in and visit the doctors who’d treated him.

“Iowa’s a nasty state, for me to ride in. The roads are the most hideous roads, condition wise. There’s not one smooth ride in Iowa,” Freed said, laughing. “But also, every area has a thing you can hang your hat on. Iowa, even though it’s very hilly, has such a unique scenery to it, with the hills and the farms, that no place in the country has. There’s no place in the country that looks like Iowa.”

Freed said the rides have exposed him to all kinds of people and experiences. He shared the trail with a world-class chef from Korea for a time, who carried 150 pounds of food with him on his bike. He also said he’s seen people doing everything from reading, drinking, and eating bowls of cereal while driving.

But what really motivates Freed has been his numerous encounters with people in his exact same position: those who have lost or are caring for a child suffering from EB.

“Before I did this, I came across one living child with EB. Doing this, I’ve gotten to meet dozens of families with kids with EB,” he said. “I’ve met a family that’s lost two kids to EB. That was the most emotional experience, to be in the company of somebody who lives with the same black hole that I live with.”

Freed works closely with Debra for America, a nonprofit charity organization which works to improve the lives of those suffering from EB. On this trip, Freed has managed to raise $30,000 in donations through his website, all of which went to Debra for America.

Currently, Freed isn’t sure if he’s going to attempt the Big Ride again next year. While he doesn’t consider the past to be completely put behind him, he said he wouldn’t be the person he is today without the experience.

“When I left last year, I hoped to come back a different person. Lose some of my selfishness, some of my hatred for the world,” he said. “So that has changed a little bit with me. Has it healed me? No. Has it helped me put one foot in front of the other? It has.”

Those who wish to support Freed and Debra for America can find more information on Freed’s website, www.thebigrideforeb.com.

Jack Langland can be reached at jlangland@ottumwacourier.com.

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