It's considered the most deadly brain tumor known to man, cruelly targeting children under 10 years old, including Orange County’s 8-year-old Alan Vasquez and 6-year-old Andrew Lorie.
Their families sought experimental treatment in Mexico for the incurable cancer known as diffuse intrinsic pontine glioma, or DIPG.
Alan lost his brave battle in November.
“It was supposed to be a very rare cancer. I was thinking to myself, ‘Something just doesn't seem right about this,’” said researcher Patricia Helman.
Five years ago, Helman's family was also touched by the tragedy.
SEMINOLE COUNTY, Fla. — %
After learning of the other children, she began digging into data and found specific numbers for DIPG are hard to pinpoint, but over the most recent 10-year period, just under 30 percent of all pediatric brain cancer in the state appeared in Orange and Seminole counties.
Seventy percent of the patients found in Orange County shared the same 32828 ZIP code.
“Those numbers were just not lining up for me. Especially when (in) Orange County, or 32828, is only 5 percent of the population overall,” Helman said.
The findings were shown to Dr. Amy Smith, an Arnold Palmer Hospital neuro-oncologist.
“The incidence of pediatric brain tumors is about 37 cases per million children,” said Smith.
That's about 200 kids a year in Florida.
Still, Smith said the numbers aren't out of line with national averages.
But the need for research is why Smith is now leading a large multicenter study of specialists who will work to compare and share state and national data on pediatric brain cancer.
All agree the greater the awareness, the more hope there is to unravel the unknowns of this devastating disease
“Especially when you have this data that leaves so many holes, it's really just finding answers,” said Helman.
This summer, Smith plans to publish and present what the study at an international meeting on pediatric brain cancer.
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