Sebastian DeFrancesco: Out of the Rabbit Hole, Into the Light


Sebastian with Rep. Sam Farr
Sebastian with Rep. Sam Farr

When Sebastian DeFrancesco was an 11-year-old boy in the 1960s, his dog, Pudgy, decided to have a litter of puppies down a rabbit hole surrounded by a mound of dirt. One day, checking on her puppies, Pudgy got stuck in the hole. Sebastian descended into the birthing den to attempt a rescue. The puppies surrounded his face, squeaking and licking him, and before he knew it, he was stuck, too. After a long three hours, a friend came looking for him, saw his feet sticking out of the hole, and managed to pull him out. It would not be the only time he got stuck down a rabbit hole.

The Vietnam War called in 1972 — his draft lottery number was six — and DeFrancesco, now 19, enlisted in the Army. By this time he had distinguished himself as a standout soccer player. Wiry, tall, fast and fearless, he graduated from Special Forces school as one of only six out of his original class of 300, having trained to jump out of C-130s and jets in Airborne School. As a Green Beret he was deployed to northern Italy, the land of his ancestors. “I was excited about going to Europe. It sounded great,” he says, “but as we all know, life can turn on a dime.”

He and five other soldiers en route to a jump site on a training exercise were riding in a jeep with no visible stars and no moonlight. “Those were the worst jumps possible,” he says. “The most dangerous.” They never made it to the jump site. The driver lost control, rammed into a cement mileage marker and the vehicle full of soldiers went over an embankment and into a river.

Sebastian DeFrancesco (right) is shown with a fellow vet at the Vietnam Veterans Memorial.
Sebastian DeFrancesco (right) is shown with a fellow vet at the Vietnam Veterans Memorial.

DeFrancesco briefly remembers being dragged from the river up the embankment before blacking out. When he came to, he saw his injured buddies, all on stretchers, in a circle in a dimly lit room. His friend Patrick Davis, on one of those stretchers, had died, but not before he had pulled DeFrancesco, who sustained a broken neck, from the river.

Now 22 and a C5-6 quadriplegic, he was hospitalized in traction for five months, then in a ward with 40 beds and later in a room with nine others, some of them Korean War vets who had been there for decades. Then came rehab. He focused on fitness training and sports, but first he had to master the everyday challenges of being a quad. A steep ramp led from the cafeteria to outside. Each day he worked to go further up the ramp. It was all on him. No rehab staff pushed him to gain full independence, but independence was his goal.

When he left rehab, he had nowhere to go: no long-term care facility, no accessible home. “There weren’t even curb cuts back in those days. And I had some fear of not being able to take care of myself,” he says. “Finally, I found enough courage to move into an apartment with another vet, and at first an aide came in the mornings to help us.”

Every day he pushed himself to a track near their apartment and circled lap after lap until he slumped over with exhaustion. “People said I was crazy. But I knew that being stronger would make me healthier.” Eventually the VA outfitted him with an Econoline 350 van with a lift and hand controls, and he took off into his new life.

Facing Disability

“Facing a disability is like being reborn,” says DeFrancesco. “With focus you can do whatever you want to do, but the disability makes you really be aware of your life choices.”

He chose to return to his athletic roots and began competing in local, national and Paralympic athletics. Even a partial list of his athletic accomplishments is impressive. Beginning with his quad rugby successes in the 1980s, he moved into coaching, eventually becoming assistant head coach of the National Wheelchair Rugby Teams for two seasons, was inducted into the Wheelchair Sports Hall of Fame and named the United States Olympic Committee’s Athlete of the Year in 1993. He was also inducted into the New England Sports Hall of Fame, has competed in five Paralympic Games from 1984 to 2000 and has won four Paralympic medals and eight National or Para Pan-American Games medals.

DeFrancesco’s early success in sports led to a sense of gratitude and advocacy efforts on behalf of others. Since the 1980s he has lobbied the U.S. Congress regularly to improve hospitals and living arrangements for veterans, particularly the homeless. Also, he has been relentless in pushing businesses to follow the provisions of the ADA. He was instrumental in ensuring that the remodel of Boston Garden included upgrades to line of sight for wheelchair seating and went to court to get the changes enforced.

In California’s Bay Area he is now working with the owners of the Warriors’ NBA Developmental League team to provide appropriate line of sight seating for wheelchair patrons at the arena in Santa Cruz. The Mountain Winery, a concert venue, now has seating that all wheelchair users can appreciate, and parking machines in Santa Cruz have been lowered so that wheelchair users can reach them, all due to DeFrancesco’s efforts. “The world isn’t perfect,” he says, “but we can make it better. Sometimes it isn’t worth the fight. Sometimes it’s the way to go.”

His drive to make facilities accessible carries into his business endeavors. Today he is co-owner of Pacific Blue Inn in Santa Cruz, California, which provides nine fully accessible rooms. Along with Joe and Debbie Quigg, wheelchair users who he met through wheelchair sports 37 years ago, he founded Easy Access Developers to increase the accessible housing stock in Santa Cruz. Together they have developed multiple apartment complexes and houses.

“Joe and I wanted to make a difference,” says DeFrancesco, “and by investing in the Inn and apartment buildings, I was developing assets that I could give to my kids later on.”

With his focus on helping others, whether it’s his kids, other wheelchair users or veterans who can use a hand up, he is always generous with his time and efforts. The work that he does for the Veterans Administration, the local Veterans Hall, and the Palo Alto Veterans Hospital, is legendary. He serves as an executive board member of the Bay Area Western Paralyzed Veterans of America and is a member of the Veterans Council, Santa Cruz County. His work goes well beyond meetings to include one-to-one counseling, workshops and coaching. He encourages newly injured veterans to try out all sports, including billiards, bocce, basketball, rugby, track and field and table tennis.

Still, throughout all his years of competition and service, DeFrancesco’s major role has actually been as husband and father. Early on, he married and had a child, Alicia, who is now completing her doctorate in biology at Harvard. That first marriage ended in divorce, but he fell in love again and went on to marry Liz, who coached Paralympic swimmers. After several years of marriage, they decided to have children and adopted their daughter, Emily, from China.

Then came another crisis. In 1999, when he and Liz were arranging the adoption of their second daughter, Anna, he had to take batteries of blood tests as part of the process, and it was discovered that he had hepatitis C. Down the rabbit hole, again.

The Ultimate Challenge

“My prognosis wasn’t good,” he says. “I cried. I didn’t want to die. I didn’t want to get liver cancer. I wanted to be there for Liz and our daughters.” The adoption went through, but DeFrancesco was too sick to travel to China to welcome little Anna into the family.

Dealing with hep C over the years made him sicker and sicker. Treatments with interferon were not successful. Since his liver was unable to process waste and water, he ballooned from 145 pounds to 205 pounds. He tried to push on his handcycle every night, but it got harder and harder. One night he could only make one turn of the handles. “Then I knew I was getting bad, and I tried to prepare for the worst.”

Sebastian and Liz DeFrancesco on their wedding day.
Sebastian and Liz DeFrancesco on their wedding day.

No quad had ever received a liver transplant, but after many trips to the local hospital to have his stomach drained, he was finally accepted onto three transplant lists: UC Davis, Stanford and the Mayo Clinic in Phoenix. In extremely poor health, he was admitted to UC Davis Hospital in hopes of receiving a liver transplant. On dialysis, he was so weak that he would not be healthy enough for surgery for much longer. His liver was like shoe leather. He was beaten down without enough energy to even say hello, hallucinating and seeing contorted shapes wherever he looked.

Several donor livers became available but were the wrong blood types. No matches. Then a call from Stanford Hospital came in. They had found a matching donor liver. He was rushed to a helicopter, but before it could take off, it was grounded for mechanical failure. With the drama ramping up like a thriller movie script, he was then transferred to an ambulance, and with Liz and Alicia in the front seat, they sped the 100 miles to Palo Alto, California.

“I was aware of what was going on,” says DeFrancesco. “When they got me prepped for the operation, I was joking with the doctor and saying, ‘Hey, lighten up. I’m going to get a new liver.’ But I was really in bad shape, worse than I even knew at the time,” he says. “I was right at the end of the tunnel … close to dying.”

But once again death would have to wait. DeFrancesco got the transplant he needed, and in doing so added another accomplishment to his list: first quad to receive a liver transplant.

The recovery from the ordeal took many months, and during that time, his weight went down to a mere 98 pounds. He struggled to regain his health. Finally, in 2013, when new hep C treatments became available, he was cured.

Now 63 and 10 years post-transplant, he is as active as ever before. He has circled back to sports, competing regularly in table tennis, including the Parapan American Games in Toronto in 2015. He won silver in the 2016 U.S. Nationals for the quad class and was named to the Quad Rugby Hall of Fame. His family, business, advocacy and VA efforts are ceaseless.

Today he even finds time to sing with Wreckless Abandon, a blues band led by his buddy, business partner, and fellow quad, Joe Quigg. At a party celebrating the tenth anniversary of his liver transplant, he ad-libbed the following blues riff:

Yeah, I got the liver blues
But I had a beautiful woman who took care of me
She’s 5 foot 10 with blue eyes
I fell in love with her and she kept me strong
Doctor said he’s too far gone
She said “Hey doc, give him a chance”
They found a liver and here I am.

It was the first time he’d sung in public as an adult, and it felt a little like being pulled out of that rabbit hole one more time.


Support New Mobility

Wait! Before you wander off to other parts of the internet, please consider supporting New Mobility. For more than three decades, New Mobility has published groundbreaking content for active wheelchair users. We share practical advice from wheelchair users across the country, review life-changing technology and demand equity in healthcare, travel and all facets of life. But none of this is cheap, easy or profitable. Your support helps us give wheelchair users the resources to build a fulfilling life.

donate today

Comments are closed.