Saturday, Feb. 09, 2013

In Cary, heart-transplant family turns to friends and strangers

The high schoolers gathered before sunrise with their trombones and flags in the fluorescent-lit hallway. Outside, the adults looked out past the green and white balloons, to the parking lot and the pinkening sky.

They were waiting for Lucas Santos.

Three months after a medical transplant gave him a new heart, the 17-year-old was ready to return to class.

As he arrived at Cary High School on Monday morning, the horns blew, the kids cheered, and Lucas smiled quietly as a group hug coalesced around him.

“I think God’s given me a second chance at life,” Lucas said days later.

But the transplant hasn’t changed everything. There are still bills to pay – and for that, the Santos family is turning to others. As Lucas wraps up his junior year, family friends, fellow church-goers and Cary-area businesses are trying to raise more than $60,000 in his honor.

It’s a grassroots effort – with an innovative twist.

Reaching out for help

Since Lucas was born with a heart condition, co-pays and medical debt have piled into the tens of thousands. But his parents, Larry and Simone Santos, have been able to pay their way with the help of good insurance, and they were long hesitant to ask for help.

“When you are married, when you have kids, you feel as a man the burden that you want to provide, and you think you can conquer the world,” Larry Santos said.

That conviction began to change, he said, as the family split its time and funds between 42 days in the hospital for Lucas’ transplant, full-time work for Larry and the usual demands of two teenage children.

So, as the transplant approached last November, Larry and Simone were ready to listen when a team of Duke Hospital specialists suggested the Children’s Organ Transplant Association, a national nonprofit that picks up where government programs and private insurance fall short.

Soon after, the nonprofit and the family set a $60,000 fundraising goal based on the estimated long-term costs of care, including a lifetime regimen of drugs to ensure Lucas’ body doesn’t reject his heart.

COTA will give guidance as Lucas’ supporters raise money, which will go back to the national organization. In turn, COTA has promised to provide for the long-term medical costs that the Santos family faces.

The idea is to augment communities’ giving spirit with marketing and financial expertise, and to use the nonprofit’s large pool of funds as a safety net.

While the 26-year-old Indiana-based organization often is a last resort for the 250 to 300 children it’s currently helping, the group also is open to middle-class families that face serious long-term costs.

“Just because this child has been transplanted and they do have insurance, that doesn’t mean they’re in the clear. There’s so much more to a transplant,” said Lyndsi Bennett, a spokeswoman for COTA. “Sometimes these families don’t realize exactly what they’re facing.”

Grassroots effort

The campaign in honor of Lucas first found momentum at the Santos’ First Baptist Church in Cary, where Lucas and his family practice the deep faith that has long buoyed them.

“We’ve never asked for outside help. We’ve never had any kind of support – until now,” Simone Santos said.

For marching band mates, church members and friends, it’s a chance to finally take action after watching Lucas’ heart struggles through the years.

“That’s sort of what being friends and supporters are – helping people through these crises and challenges,” said Angela Padgett, local marketing coordinator for the campaign.

Events so far have included meetings at the church and “sales days” at local businesses, where use of a special coupon sends a percentage of the purchase to the nonprofit.

The group is canvassing now for more members and revenue sources, such as a recycling program and wristband sales.

“It really is grassroots,” Padgett said.

All money raised will go to pay a COTA child’s organ transplant costs; COTA’s overhead is paid by interest on the money raised.

The future

For Lucas, things are looking up. Besides his return to Cary High School, he took the stage at church last Sunday for his first trombone performance in months.

And with the help of friends, his family can worry less about the medical bills that are by now a fact of life. With some costs relieved, more money will go toward family vacations and the two Santos kids’ education.

The money also could put off one danger of a health-care system built around private health insurance.

“One of the leading sources of medical bankruptcy is actually underinsurance – people who are insured that don’t have comprehensive coverage, and in a catastrophic situation get stuck with tremendous bills,” said Jonathan Oberlander, a professor of health policy and management at the University of North Carolina.

In the most extreme cases, communities and nonprofits step up instead. But it’s a different situation in Canada, Germany and France, Oberlander said.

In those more-socialized health-care systems, he said, a family wouldn’t see health costs skyrocketing into the hundreds of thousands of dollars. (Taxes generally are higher in those countries as a trade-off.)

Larry and Simone Santos’ native Brazil also aims for “universal” health care. But Larry Santos said he prefers the model here, where he feels he has more freedom in his family’s medical choices and his insurance has adequately shepherded him through mind-bogglingly expensive medical operations.

Now, with life slowly returning to normal and blood pumping fresh in Lucas’ body, the Santoses say they’ve been given a new heart, and a new world.

Lucas plans to finish his junior year, return to marching band and study engineering at N.C. State University or Virginia Tech.

“What mostly went through my mind, is that if this is what’s going on with me, than God has a purpose for me,” he said. “I just have one of the testimonies that could touch a lot of people – the miracles that God can do.”