Children who have cancer don’t have much fun. This group is trying to change that.

When Silvia Vanni lost her 7-year-old son Sal to cancer in 2011, she poured her heart into helping children who have been diagnosed with cancer.

As one of the founders of the Mystic Force Foundation — a nonprofit that raises money for pediatric cancer research and hosts parties for kids undergoing chemo — she and her husband, Steven Vanni, 59, a neurosurgeon at the University of Miami, have raised more than $1 million.

“I just want to help keep them [the kids] as happy as possible while they go through chemo,” Silvia said.

To do that, she hosts monthly Family Fun Nights at Nicklaus Children’s Hospital.

“Everything is donated. The other day I wrote on Facebook that we were doing a toy drive, and someone — I have no idea who they are — sent me two pallets full of toys. It’s just amazing,” she said.

The youngest of their five children, Sal was diagnosed with stage IV neuroblastoma when he was 4 years and complained of pain in his leg. His parents were told he had a 20% chance of living five years and they were determined to beat the odds.

Sal spent 18 months at Memorial Sloan Kettering in New York City, and later underwent treatment in four other states, but nothing worked.

Sal’s last words said everything about his battle, “I’m in so much pain; I need a new body.”

“That’s the reason I work this hard — I don’t want another child to go through what Sal did. And I don’t want another parent feeling the way I’m feeling,” Silvia said. “There’s no running away from grief.”

As researchers work on a cure, Silvia focuses on keeping the kids entertained.

“I want them to be able to forget what they are going through for a little while,” she said.

When Sal was in the hospital, she could afford to buy him any toys he wanted. “We would just lie in bed and order toys online — that was his favorite thing to do — but I know other families can’t just do that.”

With the help of Victor Dante, 57, the owner of a building at Northeast 166th Street, between 19th and 20th avenues in North Miami Beach, Mystic Force has turned a 700-square-foot retail space into The Hero’s Hangout — a place where children undergoing chemo can play with an assortment of toys and activities. Dante donated the space rent free.

And while the room isn’t sterile, it’s kept germ free and closed to the public, so the kids can play without their masks on.

Dante decided to donate the space when he met Silvia and learned her story.

“The passion and love she exhibited every day made me want to help. I also have children of my own, so it’s touched me,” he said.

Vanni has a community of people behind her.

“Everyone that helps me, everyone that helps at events, they are all volunteers,“ she said. “Every single refrigerator, the cabinets, the TV, everything is donated. There are so many wonderful people in this world; it’s just crazy,” she said, fighting back tears.

Research and technology

According to the National Cancer Institute, cancer is the leading cause of death from disease among children and adolescents in the United States. However, research in the area is underfunded.

“When was the last time you saw an industry advertisement for kids?” said Steven Vanni.

Much of the adult cancer research in the U.S. is funded by pharmaceutical companies, and they don’t tend to spend the same funds for children.

“If we could figure out how to treat kids [with cancer], it would transfer to helping adults, too,” he said.

As a neurosurgeon, he often removes aggressive tumors from adults.

Children are often treated with drugs designed for adults, but at a lower dose. The problem with this approach is that the drugs are too strong and often damage both cancerous and non-cancerous cells.

“Kids suffer long-term damage after they are cured, and are often at risk of developing a secondary cancer from the harsh meds,” said Dr. Regina Graham, who has a Ph.D. in molecular and cellular biology and is the head researcher at the Mystic Force research lab, which Dr. Vanni oversees.

In addition to conducting research, the lab has developed a way to deliver the meds that would save normal cells from damage.

“We’ve developed a nano particle delivery system that’s targeted and doesn’t go into normal cells — that could drastically change things,” Graham said.

Silvia has worked to create awareness around the cause, both locally and in Washington. The city of Miami Beach has deemed Sal’s birthday — April 22 — Salvatore Vanni Day.

“Most people don’t know what these kids go through,” Silvia said. “I’ve had people tell me that they thought all kids with cancer survived.”

How to help

https://www.mysticforcefoundation.com/

Contact: Silvia Vanni: 305-726-1155

This story was originally published December 26, 2019 at 3:12 PM.