They made Charlotte better in 2018 (Part 2)

Erin Santos with her daughter, Isabella. Santos has responded to Isabella’s death by helping others in similar situations.
Erin Santos with her daughter, Isabella. Santos has responded to Isabella’s death by helping others in similar situations.

Each year, the Observer editorial board searches for heroes among us who make our city and region better. This year, we’ve found people who’ve made the most of a second chance, helped dads connect with children, helped students explore and forever changed treatment of cancer in Charlotte. (We published our first two honorees yesterday.) To them, and to all who make our community better, we say thank you!

Reimagining pediatric cancer care in Charlotte

Charlotte’s Isabella Santos was 2 years old when she was diagnosed in 2007 with neuroblastoma, a rare cancer that mostly afflicts very young children.

Her parents couldn’t get the treatment they needed for her in Charlotte. So they took Isabella to Sloan Kettering in New York and to Children’s Hospital of Philadelphia to try to save her life.

Even as they cared for their daughter, they quickly created the Isabella Santos Foundation to raise money to fund research at Sloan Kettering for a cure. At first it wasn’t much – they raised $7,000 at their first 5K race in Ballantyne.

But Isabella’s mother, Erin Santos, quit her job at Lending Tree to work on the foundation full time, and she changed the focus. She had had the resources to take Isabella around the country, but she knew other families didn’t, with deadly results. They needed world-class treatment in Charlotte.

So Erin stopped sending money elsewhere and instead worked with Levine Children’s Hospital to treat neuroblastoma here. The foundation raised $1 million last year and $1.4 million this year. It used part of that money to partner with Levine to build an MIBG treatment room, one of fewer than 20 in the country and arguably the best.

Erin Santos and the Isabella Santos Foundation have forever changed treatment of neuroblastoma in Charlotte. But they’re not content to stop there. They have pledged to raise $5 million over five years to have Levine build a rare and solid tumor program that would treat about 15 different rare cancers. It would be the only one of its kind in the country.

Isabella Santos died in 2012 at the age of 7. But her life, through the work of her mother Erin, will benefit others for generations.

Being there in ways big and small

This fall, a group of 200 fathers and their families got together at UNC Charlotte to enjoy some college football on a Saturday afternoon. The gathering was a celebration, first of all, a day to applaud those fathers for more intentionally becoming a part of their children’s lives. It also was an affirmation of the impact one man has had on all of them.

Five years before, Jeff Usher was approached by Charlotte-Mecklenburg Schools about male engagement. Usher had written and given talks about the topic, and CMS wondered if he could make that message real.

Today, Usher’s non-profit organization, Be There Dad, is working in 18 CMS schools, where Usher encourages fathers to connect with their children — and other children who need an adult presence — in a variety of ways. “I tell them, ‘Go to your principal and ask them what they need to do to impact the children,” he says.

The answers vary: Some schools need adults to read to students. Some need mentors. Some need help with field days or dances. “I think as much as anything it’s kids seeing dad’s a player,” Usher says. “Dad’s reading. Dad’s there, too.”

There also are the big events — the football game and, next month, a UNCC basketball game — where Usher can see how large his reach has been. More than 10,000 children are touched each year by Be There Dad. “I never envisioned this,” he says. “In your heart, you hope for it, but for it to take flight like it has? No.”