Montana man will motorcycle across America to raise awareness of hemophilia

Williams has gotten some attention over his 16 years of riding, including winning awards at six bike shows. But the journey he's about to start isn't about garnering attention or praise for himself. 

It's about raising awareness and money for kids who suffer from the same blood disease that took a life of one of his own children, Williams said.

Under his motorcycle helmet, Williams' wrinkle-etched face is marked by a mixture of excitement and sorrow.

It is the face of a father who lost one child from hemophilia and almost lost another who was told they may not live past 18. It's the face of a husband with two wives that died.

Williams is an ambassador for Save One Life, an international nonprofit serving children and families with bleeding disorders in developing countries. The organization is backing Williams’ trip through its “Wheels for the World” campaign.

Beginning Aug. 20, the 75-year-old retired engineering director will ride across the United States to raise awareness and money for children with hemophilia, a usually inherited bleeding disorder that primarily affects males.

Hemophilia A prevents blood from clotting properly, leaving patients vulnerable to prolonged or spontaneous bleeding, including potentially dangerous bleeding into the joints and internal organs. It occurs in about one of every 5,000 male births. About 33,000 males live with hemophilia in the United States, according to the CDC. Globally, the World Federation of Hemophilia estimates that about 1.1 million males have the disorder, including about 418,000 with severe hemophilia, but most remain undiagnosed.

“There’s going to be some mixed feelings, some bittersweet emotions, because I’m hoping to do something that will attract some attention in the hemophilia community,” Williams said. “I’m doing this on my own time and my own expense. I know I’ll be thinking about my son Trevor, who is still alive, and his mother and his stepmother, because I'm carrying their memories with me and (the memory of) Trevor's twin brother, who passed away at birth. The memory of those loved ones will definitely be with me.”

In 1986, Williams and his second wife, Rita, were expecting their first child. Six months into the pregnancy, they learned they were having twins. 

But Rita gradually became weaker toward the end of pregnancy. At eight-and-a-half months, she began to hemorrhage uncontrollably. By the time she reached the emergency room, one of the twins had died in the womb.

A few days later, the other son, Trevor, was born via cesarean section while Rita was still recovering from her ordeal. Trevor also experienced intense bleeding during the surgery. The pediatric hematologist later found out that Trevor had severe hemophilia A, likely the cause of death for his brother. Doctors told the family that Trevor would be lucky to live to 18.

“That was devastating news,” Williams said. “As a new parent, to lose one child was devastating. To think that we might lose the other one somewhere down the line was almost more than we could bear. I saved up a few thousand dollars, just so that if the worst happened, at least I knew there was a little financial cushion there for me to take care of my son's funeral.”

With the prelude, the Williams family lived in constant fear throughout Trevor's childhood. 

Most bendable parts of Trevor’s body were brittle. He experienced internal bleeding at the knees, ankles, shoulders, wrists and elbow, particularly the arms, since they are more active than any other parts for young children. Richard and Rita had to touch Trevor’s body frequently to check if one part felt warmer than other, a hint that blood may be released through a vein somewhere in that joint.

“It was an around-the-clock effort to watch him to try to keep him in as good health as we could,” Richard Williams said. “Because frequent bleeding into joints like knees and ankles cripples the hemophiliac. He has to use a cane or crutches, or even have to have joints fused so they don't move anymore, because the damage (it does) to the cartilage and synovial fluid and so on. So we did our best to protect him.”

The couple sewed thick sheepskin and foam rubber patches on the joint areas of Trevor’s shirts and pants, and put a helmet on him in case his head struck on the floor or against a coffee table until he was old enough to master his motor skills.

Trevor was “the bravest little guy” growing up, Williams said. The child didn’t understand what happened to him, but over the repetitive times of his urgent bleeding, he would obediently lay on the exam table and let the medical professionals infuse him, take his temperature and blood pressure.

When he became a teenager, Trevor became self-conscious and did not want his friends to know about his condition. Doctors had surgically placed a port-a-cath beneath the skin of his chest to make receiving clotting factors, a blood protein that helps stop bleeding, easier, but Trevor felt embarrassed when others noticed the lump or scar. The family eventually had the device removed and returned to administering the factor through veins in his elbows, hands or feet.

Williams said hemophilia treatment has changed significantly during Trevor’s lifetime. Earlier treatments made from donated human blood carried the risk of transmitting HIV, hepatitis and other blood-borne illnesses. Because of advancing technology, though, the family later switched to recombinant clotting factor, which is produced using laboratory-grown cells.

Although Williams said access to the treatment has been life-changing, the cost is “staggering.” The medical cost for a hemophilia patient is between $250,000 to $300,000 a year, he said.

Williams spent 20 years navigating the complex realities of America’s healthcare system. Because insurance plans often imposed lifetime coverage limits, Williams kept changing employers to maintain access to the treatment his son needed to survive.

While the family was managing Trevor's condition, another tragedy struck.

When Trevor was four, Rita was diagnosed with stage four colon cancer. A part of her colon was removed. She underwent surgery, followed by radiation and chemotherapy. Her hair fell out, her skin turned yellow and she spent about seven months in the hospital before dying the following year.

Williams’ third wife, Dixie, stepped in to raise Trevor after Rita died. At that time, they had a home healthcare nurse come to infuse Trevor three times a week. Dixie learned to help Trevor with his medical infusions. This was a “game-changing” move because the family had much more control over Trevor’s bleeding, Williams said. However, Dixie died of heart failure in 2014.

Against the odds, Trevor lived well past 18. He's approaching 40 today, working as a full-time butcher at a grocery store in the community he grew up in.

The survival of Trevor and the death of two wives shaped Williams’ life. Williams brought the  heavy memories of those loved ones to Save One Life, transforming his grief and love into a commitment to help more children who suffer from hemophilia around the world.

Through the organization, Williams witnessed the enormous disparities in access to care based on where a child is born. Children with bleeding disorders in developing countries may not be as lucky as Trevor. Many of them are left undiagnosed or untreated and can die from complications that could be reversible in the U.S.

Over the years, Williams has sponsored boys with hemophilia A and B and girls in India with Von Willebrand disease. He is now helping children from Burundi and Honduras.

Williams met Barry Haarde and Vaughn Ripley, both men with hemophilia, through Save One Life. Haarde rode a bicycle across the United States six times, coast to coast, while Ripley rode hundreds of miles for the same cause. Doug Mildrum, the partner of the organization’s founder, Laureen Kelley, also inspired Williams through his own cross-country bicycle ride three years ago, despite having no personal connection to hemophilia.

Their efforts motivated Williams to take on a journey of his own. At age 75, he still decided to get on the road with his motorcycle, as travelling across the country by bike seemed physically impossible for him.

He will go 300 miles per day, five days a week. The ride will conclude on Sept. 13 in Portland, Maine.

"We are so thrilled that Rich is taking on this cross-country motorcycle ride in support of Save One Life," said Ariana Bellan, spokesperson of Save One Life. "Opening the event to all wheels allows more people to be a part of the movement while helping provide direct financial assistance, education, and hope to people living with bleeding disorders in resource-limited countries. Rich has been an incredible volunteer and advocate for Save One Life, always finding ways to share our mission in his local community. I know his impact will only continue to grow as he rides across the country, inspiring others to join him in bringing hope to people with bleeding disorders around the world."

This time, every mile will carry a name, a purpose and a period of life.

“The biggest thing I would like to say to people is that serving others, doing something for someone else, is the best way to heal or cure whatever heartache or tragedy you have experienced,” Williams said. “If you wallow in your own sadness or grief, then it exacerbates into something worse. But if you want to overcome that, then get involved, find a way to volunteer for some worthwhile cause, help someone else, whether financially or just with your time, or with any skill that you have.”

To support Williams’ trip. visit runsignup.com/Race/107621/Donate/Nf98m0lhaHlKVfX5.