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Chris Smith: Ben Thornton is headed to college, thriving with a second heart and a set of wheels

Being 3 years old wasn't anywhere near as much fun for Ben Thornton as for typical preschoolers - nowhere near as light on everyday worries and pain.

At this time in 2006, the boy and his folks and his new baby sister were living in Cloverdale. A persistent cough led to a harrowing discovery: Ben's heart was enlarged and besieged by a rare and menacing congenital defect.

Time froze for Angel and Gary Thornton the moment they heard that their son's life depended on him having his heart removed and replaced.

“I pretty much jumped out of my chair,” recalled Angel, now a legal assistant in Santa Rosa.

Elaborate medical measures kept Ben alive while he awaited the transplant of a healthy heart from an anonymous, deceased donor. The technology that sustained Ben before the surgery was not without consequences: A blood clot lodged in an artery to his spine, and by impeding blood flow the clot partially paralyzed his legs.

At last a suitable donated heart was found. Early in August 2006, at Lucile Packard Children's Hospital at Stanford University, a high-risk transplant surgery reset and renewed the severely ill boy's life. Ben recovered well, but the spinal cord damage caused by the clot made walking so arduous and wobbly that he opted to move about on wheels.

“He didn't like taking forever to get from Point A to Point B,” said his dad, a Sonoma County Sheriff's deputy. Gary Thornton remembers that not long after Ben took a test ride in a manual wheelchair “he was zipping around in that thing.”

Years later Ben was on the cusp of his teens and living with his family in Santa Rosa when the then-quiet and tentative kid discovered something that brought him a world of joy and confidence and independence: highly competitive wheelchair basketball. He poured himself into the sport. It and his coach utterly changed his life.

Today Ben Thornton is 17, about five months from turning 18. He awaits the pandemic-disrupted graduation of the Maria Carrillo High School Class of 2020.

It's bittersweet for him to be wrapping up his nearly seven-year run with a youth wheelchair basketball team out of the East Bay. But he's got plans.

Ben is anticipating, with all his heart, making a start at the University of Arizona - on full-ride athletic and disability-related scholarships.

Had he not discovered adaptive basketball, says a young man awash in gratitude, “I don't know where I'd be.”

Ben's folks are as grateful and proud as would be any parents of a high school senior awarded scholarships to a respected university, and maybe a pinch more so.

They know better than anyone what their son has gone through. And they know that 14 years ago they nearly lost him forever.

Gary and Angel Thornton had just welcomed daughter Ava into the family when, in April 2006, they agreed that Ben should see his pediatrician. He'd developed a stubborn cough that caused his folks to worry that he might have pneumonia. If only the malady were that simple.

A chest X-ray showed that Ben's heart was enlarged. Further testing revealed pediatric restrictive cardiomyopathy, a rare cardiac disease that makes the heart muscle rigid and incapable of filling with and pumping blood. The boy would need a new heart.

With that, the Thorntons' all-consuming medical saga began.

About a month after the initial doctor's visit, swelling appeared in Ben's face and hands. His folks took him for the first time to the esteemed children's hospital at Stanford.

He was admitted and the following morning was in a room when he went into full cardiac arrest.

Doctors rushed to him to commence chest compressions and administer oxygen through a hose.

They were at it an hour when, at last, Ben's heartbeat and breathing resumed. His parents count as something of a miracle the finding that he'd suffered no brain damage from going so long in a lifeless state.

In May, the Cloverdale tyke with a damaged heart was connected to a heart-lung bypass machine. And on June 7, he became one of the youngest patients in the U.S. to be surgically attached to a Berlin Heart, an external, computerized pump connected to tubes that pulled blood from the left ventricle and sent it to the aorta.

Invented and manufactured in Germany, and affixed to Ben by a German doctor, the Berlin Heart would not receive FDA approval for another 5 years. In 2006 the device was allowed for use in the U.S. on a case-by-case basis.

“We didn't have any other options,” Angel Thornton said.

Her boy was kept alive by the Berlin Heart at Packard Children's hospital for more than 50 days as he awaited a replacement heart.

All through that anguishing period, friends and neighbors and strangers in Cloverdale and throughout Sonoma County prayed and gathered at fundraisers and donated dollars for Ben and his medical care. Gary Thornton's boss, then-Sheriff Bill Cogbill, ordered an exception to the uniform code to allow deputies to wear bracelets that read, “Heart to Heart for Ben Thornton.”

At last, after nearly two months on the Berlin Heart, word came that a donor's heart had been found. On Aug. 3, 2006, a surgical team at the Stanford hospital transplanted it into Ben.

To this day, he and his family know nothing about the person who, prior to the organ donation, was brain-dead and on life support with no chance of recovery.

“We wrote letters, but they were never received by the donor family due to them relocating and not leaving a forwarding address,” Angel Thornton said. “We are beyond thankful for the gift they gave my son. Ben doesn't take his life for granted.”

Ben's parents, who have since divorced, brought him home after 12 weeks of rehabilitation at the children's hospital at UCSF. Their complex new domestic regime included giving Ben the daily medications he'll take forever to keep his body from rejecting the transplanted heart, and scheduling his physical therapy.

As their family adjusted to its new reality in the fall of 2006, Gary and Angel hoped and expected that as Ben grew stronger after so long in hospital beds, he would resume using his legs.

“He was still crawling and not walking,” Angel said.

But time did not correct the situation. New medical tests revealed why Ben wasn't walking: His legs had been partially paralyzed by a spinal cord injury inflicted by a blood clot that the Thorntons were told was caused by the Berlin Heart, a revolutionary device that's since been refined, or perhaps by the heart-lung machine.

At 4 and 5, Ben got around with the use of a walker. About halfway through kindergarten, his parents moved the family to Santa Rosa's Rincon Valley. He switched to Sequoia Elementary.

“I was the only disabled kid there all seven years,” he said. It was in second grade that the quiet, understandably unsure kid transitioned from a walker, the use of which hurt his back, to a manual wheelchair. Soon, he zipped in it.

Then, as a sixth grader, something important happened. Ben took part in playground basketball games, shooting from his wheelchair.

He really liked the game, but didn't perceive that it offered much to a kid like him.

One day a physical therapist, Valerie Brown-Baptista, told him and his folks about a wheelchair basketball program run in Berkeley by the Bay Area Outreach Recreation Program, or BORP. The nonprofit aims to enhance the health, independence social integration of kids and adults with physical disabilities through sports, fitness and recreation programs.

With parental assistance, Ben checked out BORP wheelchair basketball. He was reluctant at first to join in.

“I was really shy back then,” he said, “and I wasn't sure I could do anything like that.”

He was 11 when he pushed himself, literally and figuratively, to sign up to play. His life was about to be changed in a big way by the team and its mega-coach, Lawrence “Trooper” Johnson.

Johnson was left paraplegic by an alcohol-fueled auto crash at age 17. He took up wheelchair basketball and became one of the best the sport has ever seen. He won Summer Paralympics medals and MVP, Hall of Fame and other top honors as a record-breaking 15-year member of the U.S. national team.

The San Lorenzo resident also coaches the women's national wheelchair basketball team; champions the prevention of alcohol and drug abuse; and in 1989 he became only the second paraplegic to climb Yosemite's El Capitan.

Trooper Johnson remembers a “timid ... frail little kid” from Santa Rosa showing up almost seven years ago at his BORP program.

The coach perceived that Ben, who'd understandably been guarded by cautious parents, “was stronger than I think they gave him credit for.”

Ben joined BORP's Jr. Road Warriors team. His dad noticed right away, “They don't pamper these kids.” Just like regular basketball, competitive wheelchair basketball is an all-out, sweat-drenched and, often enough, hard-contact sport.

The first time Ben's competition-grade, especially maneuverable chair toppled on the court, Coach Johnson practically had to restrain Angel Thornton from running out to help him. There couldn't be a more natural response from parents of youngsters with serious disabilities.

“They are going to freak out,” Johnson said. “They're going to panic. They're going to worry.”

The Thorntons came to appreciate that Johnson wasn't out simply to teach kids with disabilities how to charge up a court and shoot a basketball. Not hardly.

His purpose, Johnson said, is to create an opportunity for kids like Ben Thornton to be “pushing themselves beyond the limits they perceive in themselves.”

Ben took right to it. “He's really a self-motivated kid,” the coach said.

Ben quickly loved the sport and the team dynamic and the practices and workouts and the trips without parents to games out of the area - and the new self-reliance he gained from it all. His life was transformed by wheelchair basketball, and so was his family.

“It has completely changed our lives,” Angel Thornton said. Trooper Johnson, she added, “has changed our whole world.

“Ben is a confident and independent young man because of Trooper and BORP. I give them all the credit.”

Ben will say that as he grew stronger, faster and bigger - he's now 5-foot-10 - he came to accept that for a complication of the medical care that saved his life in 2006 to have cost him the use of his legs is just what it is.

“It's who I am,” Ben said.

Among his fans is Chris Andrian, the prominent Sonoma County criminal defense attorney. Angel Thornton has worked for 10 years as a legal assistant for the practice Andrian runs with Stephen Gallenson.

Speaking of Ben, Andrian said, “I remember one time he said, ‘I'm glad I'm in a wheelchair.' It wasn't a disability with him. It was just another path.”

Trooper Johnson took notice when Ben began taking it upon himself to organize camps to introduce the liberating sport to younger children with disabilities. “He wants to give more kids a chance to play,” the coach said.

As a Maria Carrillo High student beginning to plan for college, Ben seized opportunities to attend wheelchair basketball camps at some of the nine U.S. colleges where the sport is played through affiliations with the National Wheelchair Basketball Association. College coaches scout for talent at such camps, and at the national youth tournaments Ben traveled to several times with Coach Johnson and the BORP team.

Last year, as a junior, Ben was focused most on attending and playing at either the University of Missouri or Auburn University in Alabama. But the University of Arizona kept coming to mind.

That school is much closer to California than the others, and it boasts the nation's largest adaptive athletics program. A call by Ben to UA last fall brought an invitation by the Wildcats' coach, Mike Beardsly, for him to visit the campus in Tucson and take a look.

That trip concluded with Ben being offered not only an adaptive athletics scholarship to Arizona but a chance to apply for a Craig H. Neilsen Foundation scholarship, open to UA students who live with spinal injuries.

He accepted the offer by Coach Beardsly, and he landed a Neilsen scholarship. Ben figures the two scholarships will cover most or all of the cost of four years of college.

Like millions of others his age whose high school graduation and college plans are stuck in limbo by the global pandemic, he waits to see if there will be actual, on-campus classes in the fall. Right now when he imagines a career it involves business or engineering.

Is he ready to leave home and to go to college about 800 miles away?

“I feel like I'm ready now,” he said.

“But when the time comes, I think it's going to be hard.”

Of course, his mom can't help but worry. Ben's immune system is compromised some by the medications he takes, so the coronavirus poses a greater risk to him.

“When he goes off to college, I am hoping to somehow control my worry,” Angel Thornton said.

“Not being able to see Ben every day is going to be difficult. But on the flip side I am so beyond excited to see where Ben goes.”

Trooper Johnson is eager to see, too. He believes the challenge of out-of-state college will be just another step up for Ben Thornton.

“This is just the beginning,” the coach said.

You can contact Chris Smith at 707 521-5211 and chris.smith@pressdemocrat.com.

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