Helping People

Pediatric cancer gets little funding. That’s where these groups come in

A small cancer patient cuddles her Bee Brave Buddy.
A small cancer patient cuddles her Bee Brave Buddy.

Oscar Ortiz has a tattoo on his right wrist. Inscribed in his skin is his son Sebastian’s name, his date of birth and the date on which he died at age 16.

“I won’t ever forget my son,” says Ortiz, whose son attended Christopher Columbus High School in Miami. “He’s the first thing I think of every day. There isn’t a moment throughout the day that I’m not thinking about him . . . . I want people to ask about the tattoo. I need to keep his memory alive.”

But Ortiz is keeping Sebastian’s memory alive in another way, too: through his foundation SebastianStrong, which raises money to fund research of less toxic, more targeted childhood cancer cures.

The battle is a tough one. Around 16,000 kids are diagnosed with cancer each year and only 4 percent of the total National Cancer Institute budget is allocated to childhood cancer, according to SebastianStrong’s website.

But SebastianStrong is far from alone in the fight. There are other determined local groups with similar missions of raising awareness and funds — and even bringing comfort to young cancer patients.

According to the American Cancer Society, one in 285 children was diagnosed with some form of pediatric cancer in 2014 (there are 12 major types of pediatric cancer — Sebastian was diagnosed with rhabdomyosarcoma, which affects connective tissues in skeletal muscles). The number isn’t huge, but it’s growing: over the last 40 years it steadily has grown 24 percent.

Yet funding hasn’t improved. There aren’t even early diagnostic scans for kids, Ortiz says.

“Big pharma as a business doesn’t care,” Ortiz says. “I’m not judging personally. There’s not enough money in it so they don’t invest in treatments. . . . Adults are the largest part of the cancer population, and they get more attention.”

That’s where SebastianStrong comes in. The organization has just completed its annual fundraising gala and 5K fundraiser, where hundreds came to run, raise money and remember Sebastian.

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Emily Veiguela, 6, and her uncle, Joel Veiguela, 40, participate in the SebastianStrong 5K in Miami Springs on Saturday, Nov. 4, 2017. The event aims to raise awareness, fund research into curing childhood cancer and honoring Sebastian's life. MATIAS J. OCNER mocner@miamiherald.com

The group also got help from Castaways Against Cancer, a group of kayaking enthusiasts who paddle from Miami to Key West to raise money for the American Cancer Society in the annual Relay For Life event.

Castaways has raised more than $700,000 for the American Cancer Society, and earlier this year Eric Pino, Sebastian’s cross country coach, paddled a specially designed kayak in honor of Sebastian all the way to Key West.

Castaways founder Steve O’Brien, a teacher at Columbus, says he’s proud that the group website has a link for donations to SebastianStrong.

“I’m completely at peace if some of our fundraising goes to another organization,” says O’Brien, a cancer survivor himself. “If you’re fighting cancer, I’m with you.”

Another key Miami player in pediatric cancer fundraising is the Live Like Bella Foundation, which was created in 2013 by the parents of Bella Rodriguez-Torres, who died at 10 after a six-year battle with a rare form of cancer. You may remember LeBron James and Dwyane Wade writing her slogan — “Live Like Bella” — on their shoes during an NBA game.

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A poster of Bella Rodriguez-Torres. Miami Dade Commissioners passed a resolution in 2013 to designate Southwest 107 Avenue from 120th Street to 136th Street "Live Like Bella Way." The resolution was passed to honor the life of Bella Rodriguez-Torres who battled cancer for six years and who passed away in May 2013. MARICE COHN BAND Miami Herald File Photo

Live Like Bella partners with doctors, hospitals, researchers, government agencies, corporations and families to fund research. The organization has funded 13 clinical trials and serves families in 44 states and 11 countries, according to Nicole de Lara Puente, chief executive officer. Live Like Bella also provides care and support for kids and families, helping them with expenses like the cost of gas driving to and from the hospital, groceries, even paying for funerals sometimes.

The organization has lofty goals, one of them getting legislation passed to improve treatment, like the Research to Accelerate Cures and Equity for Children Act passed earlier this year. But Live Like Bella relies on smaller fund-raising events, too: City of Miami police officers biked from Miami to Key West to raise money just last year, and in September Mojo Donuts sold a special donut created by Bella’s sister Reyna as part of Childhood Cancer Awareness Month. Giardino Gourmet Salads also sold a special Bella Bowl, with proceeds going to the group.

Not to be forgotten are the kids themselves. Bee Brave Buddies donates hundreds of dolls to children’s oncology wards and to families. You can ​​nominate any child with cancer at the nonprofit’s website, and a doll will be shipped out, says founder Rosanna Bernstein.

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Rosanna Bernstein with Valaria, a young cancer patient.

“I always wanted to give back and do something for the world,” says the leukemia survivor, who has been in remission for “quite a long time now.”

Bee Brave Buddies has only been a nonprofit for a few months but is planning a big fund-raising push for the annual Give Miami Day on Nov. 16 and encourages anyone eager to donate — schools, Scouts, sports groups, churches — to host a Bake for Kids With Cancer bake sale.

But of course, any help is appreciated when it comes to making a little kid smile.

“We’re hoping to send out between 750 and 1,000 dolls for the holidays,” Bernstein says. “We can use some help.”

How to help

Here’s how to donate to or volunteer for the following organizations:

▪ Sebastian Strong: www.sebastianstrong.org/

▪ Castaways Against Cancer: www.castawaysagainstcancer.com

▪ Live Like Bella Foundation: livelikebella.org

▪ Bee Brave Buddies: beebravebuddies.com

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