When Maven Borgen developed a weakness in her facial muscles called Bell’s palsy, her parents took her to the doctor thinking it was Lymedisease.
But after treating the 6-year-old for Lyme for two weeks, Maven’s parents, Melanie and Paul, noticed she wasn’t getting any better so they took her back to the doctor.
“The day before we brought her back in to the pediatrician, she complained about double vision,” Melanie Borgen said. “The doctor told us we should see an eye specialist and get an MRI. And that’s when we discovered the brain tumor.”
The discovery of the tumor led to a biopsy in March that revealed Maven was suffering from diffuse intrinsic pontine gliomas, or DIPG, a rare and aggressive form of cancer.
Borgen said she and her family knew they couldn’t wait to seek treatment and by early April, Maven was undergoing 30 rounds of radiation to treat the tumor.
“She did 30 rounds without sedation which is very amazing for a child … because everyone has to leave the room during radiation,” Borgen said.
After the radiation, Maven’s symptoms decreased, Borgen said, but they knew it wasn’t the end of the road for their daughter.
“There is no standard treatment for DIPG after radiation,” she said. “There are just experimental treatments and clinical trials which are also experimental.”
Nevertheless, Borgen started researching options for Maven. She soon found that one drug used to treat DIPG was not yet approved by the Food and Drug Administration for use in the U.S.
However, the treatment had been approved in the U.K. and the…
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