Ciara Fleming, who was diagnosed with a rare tissue cancer at age 23 months, kisses her father Donal’s shaved head. Ciara completed her treatment when she was a toddler and is 18 and cancer-free today. Donal Fleming has raised more than $1.3 million on behalf of the nonprofit St. Baldrick Foundation.
Photo: Contributed
Photo: Contributed

Life with Gracie: Dunwoody couple put spotlight on childhood cancer

In less than a week, Donal Fleming will take a seat along the Atlanta St. Patrick’s parade route in midtown and get his head shaved, a ritual born in 1999 to raise funds for childhood cancer research.

The Dunwoody father of two has been doing this now since 2003, the year after his daughter officially completed treatment for Rhabdomyosarcoma, a rare soft tissue cancer that is found in children.

Ciara Fleming was just 23 months old when her mother, Karen Leonard, noticed blood in the toddler’s diaper and doctors made the shocking discovery.

“It was devastating,” Leonard said recently. “I couldn’t believe I was walking into an oncologist office with a 2-year-old. It was scary.”

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The Flemings, who were in Ireland visiting family at the time, returned home and after a second opinion began chemotherapy treatments for Ciara at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta.

Lucky for them, after 48 weeks of chemotherapy, their little girl is a thriving 18-year-old now and cancer-free.

Lucky for the rest of us, the Flemings are not done.

Through their Rock the Bald events, they have raised more than $1.3 million and organized 34 events on behalf of the St. Baldrick Foundation, the nonprofit that began in a Manhattan Pub with this single mission: shave 17 heads and raise $17,000.

Fundraising event in Buckhead features many people getting their heads shaved to raise money for childhood cancer.

Each year in the United States, according to Dr. Karen Wasilewski-Masker, more than 15,000 children are diagnosed with cancer. Of those, about 430 live in Georgia.

Those numbers might not seem big enough to worry about but here’s the problem: While there are as many pediatric cancers as adult cancers, when it comes to funding for cancer research, the system is engineered for adults with cancer. Not children.

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Indeed, the federal government only devotes 4 percent of its cancer resources or budgets solely to kids, said Kathleen Ruddy, St. Baldrick’s CEO. Pharmaceutical companies, she said, spend even less, about one percent of their cancer budget, on children.

“They’re really not focused on pediatric needs,” Ruddy said. “Kids are kind of being told to wait their turn.”

That’s why the volunteer efforts by people like the Flemings to both help raise awareness about childhood cancer and raise funds for lifesaving research are so important.

“Without them many of the accomplishments of the last 17 years would not have happened,” Ruddy said. “That includes several new drugs and therapies for kids with cancer, advocacy to help the government to make better use of its cancer dollars, new legislation to incentivize drug makers to invest in children, and training for more pediatric oncologists in this country.”

Donal Fleming and his wife, Karen Leonard, have raised more than $1.3 million and organized more than 30 events for the nonprofit St. Baldrick Foundation, which funds research for childhood cancers. The Dunwoody couple’s daughter Ciara, 18, was diagnosed with a rare tissue cancer when she was a toddler. Contributed
Photo: The Atlanta Journal-Constitution

CHOA has received about $2.9 million in research grants from the organization since 2005; and in 2016, St. Baldrick’s awarded The Aflac Cancer and Blood Disorders Center an infrastructure grant to make more clinical trials available to patients, as well as a research grant to support the work of Muxiang Zhou, a researcher at Emory University.

What distinguishes St. Baldrick’s from most cancer charities is that kids are at the center of its mission.

While not everyone is up for shaving their locks, anyone can still be part of St. Baldrick events either by just showing up, donating to the cause or helping to spread the word, Donal Fleming said. This year, they hope to shave over 75 heads and raise $150,000.

RELATED | Would you shave your head to fight childhood cancer?

In all nearly 20 St. Baldrick events are held across metro Atlanta around St. Patrick’s Day.

Each week, Gracie Bonds Staples will bring you a perspective on life in the Atlanta area. Life with Gracie runs online Tuesday, Thursday and alternating Fridays.
Photo: The Atlanta Journal-Constitution

The Flemings run two of them, besides the St. Patrick’s Parade on March 17: The 17th Annual St. Baldrick’s at Fado Irish Pub in Buckhead on March 16; and the 4th Annual St. Baldrick’s at the Dunwoody Tavern on March 18.

Take your pick. They aren’t partial to anyone.

“What’s good for one, is good for everybody else,” Leonard said. “We just want the whole thing to be successful.”

When the Flemings attended their first event 16 years ago, Ciara was still getting treatments so they couldn’t take her to a crowded pub. They loaded her and her younger brother Rory in strollers and headed to the parade instead.

“We’re Irish and we had a child who had been treated for cancer,” Donal Fleming remembered. “We saw it as a really good cause and we just kind of stuck with it and felt fortunate to be able to give.”

What the Flemings are doing is no small thing. They are helping save children’s lives and our future.

Find Gracie on Facebook (www.facebook.com/graciestaplesajc/) and Twitter (@GStaples_AJC) or email her at gstaples@ajc.com.

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