By Kathy Walsh
DENVER (CBS4)– Some 1,500 of the world’s top scientists and medical professionals are in Denver this week for the International Symposium on Pediatric Neuro-Oncology (ISPNO). They are involved in the research, diagnosis, treatment, and rehabilitation of children with brain tumors.
“They’re brilliant minds and they are our only hope,” said Carrina Waneka.
Carrina’s daughter, Piper, has an aggressive tumor of the brain stem called Diffuse Intrinsic Pontine Glioma (DIPG). It is rare and it is fatal. It is the last incurable pediatric cancer.
Four-year-old Piper was a typical toddler until a year ago when she began slurring her speech and losing her balance.
“It just went from no concern within a few days to the worst thing you can hear as a parent,” said Carrina, wiping away tears.
A biopsy confirmed DIPG. Carrina says Piper has had more than 30 radiation treatments.
“That’s the end of the road with what we know today,” said Carrina.
But Piper has lived longer than the average DIPG patient. The median survival time is nine months from diagnosis. Piper has had a full year.
Her parents have given her everything her heart desires. They’ve also given 20 percent of the proceeds from the sale of special bracelets to “The Cure Starts Now,” a foundation started by the parents of Elena Desserich who died from DIPG. On Monday, that foundation awarded a $50,000 dollar grant for research.
“Within a decade we’ll have an approved drug for DIPG,” said ISPNO attendee Dr. Oren Becher, associate professor at Northwestern University.
That won’t help Piper, but her parents, Carrina and Nelson, take comfort in knowing they’re doing what they can to save hundreds of other children.
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About 300 children are diagnosed with DIPG in the U.S. every year. The experts say, the good news is, worldwide there are now about a hundred researchers looking for a cure.
LINK: The Cure Starts Now