FREMONT (KPIX 5) — A Bay Area teen is trying to make the most of whatever time he has left.
He has a malignant brain tumor, and based on what doctors said, he should not even be alive.
The boy’s parents are going to great lengths to help their son live longer.
A serious illness can make a family feel alone in their struggles. But what do you do when you really are alone?
That’s Ronil Mehta’s story.
Ronil, or Roni, was a normal, active kid when, last year, he developed a rare and aggressive brain tumor.
He was given radiation, but doctors said it was no use.
Manisha Mehta, Roni’s mother, said, “Essentially they said he has no time and this is it. There is no treatment. There is no surgery. There is no radiation…nothing we can do.”
But Roni recovered enough to walk and go to school again and began doing “bucket list” things like attending the NBA finals and even got a letter from President Obama.
But then, this January, his condition declined rapidly and he lost his speech and the use of his hands and feet.
Again, doctors said it was over, so the Mehtas turned to an experimental program in Mexico that administers a secret mix of drugs that are not even revealed to the parents.
Milan Mehta, Roni’s father, said, “So that was a little bit, kind of, unsettling…saying we don’t know what’s going on in there. But, the thing is, this is the only hope we had…he didn’t qualify for anything else.”
Roni has completed three therapies so far. He still can’t walk or talk but he can watch The Simpson’s again because his double vision has cleared up.
And MRI’s seem to show that the tumor has shrunk about 30 percent.
But for whatever hope it is offering, this treatment would be considered illegal and unethical in the United States.
Dr. Nicole Van Groningen is a physician of internal medicine.
She said, “Those therapies are not subject to the FDA’s very rigorous regulatory processes. And so there’s so many questions still about the safety and efficacy of those treatments.”
But the family asks, what is safety to someone who’s been given a week to live?
Milan Mehta said, “We just have to give it a try. Because if you’re here saying you have a few weeks remaining and if you want to stretch it out to a few months, as a parent what are we going to do?”
What would any parent do?
The Mehtas have already spent over $100,000 and insurance won’t cover any treatment this experimental.
But while its safety and efficacy have not been proven it is offering something the FDA doesn’t test for, hope.
If you’d like to follow Roni’s story or perhaps donate to the family’s medical fund, visit https://www.gofundme.com/hope-for-ronil