Grandfather goes to Washington to try and save ill Hudson granddaughter
Dr. Stanislaw Burzynski discovered antineoplastons, also known as ANP, in 1967.
According to Burzynski, the naturally occurring peptides have the ability to reprogram cancer cells without destroying normal cells.
An online petition fighting for a compassion exception for McKenzie has received well over 63,000 signatures.
The petition garnered the support of Granite State legislators and last fall, U.S. Sen. Kelly Ayotte wrote a letter to FDA Commissioner Margaret Hamburg.
"Every child deserves a fighting chance to live the life ahead of her," Shaheen said on Tuesday. "McKenzie is determined to beat this disease and I hope she can with the best and most appropriate treatment available."
In a letter sent to Commissioner Hamburg Jan. 17, both Ayotte and Shaheen urged the FDA to communicate directly with the Lowe family.
In early December, the Lowe family was told that McKenzie would be permitted to start ANP therapy in Texas, provided the family could find a physician willing to monitor her progress locally, family friend Kim Frenette said.
But just over a week later, further complaints against Burzynski were revealed and the FDA told the family they could no longer issue a compassion exemption.
Attempts to contact Burzynski's clinic this week were unsuccessful.
Despite the FDA's allegations, LaFountain said he still wants to see his granddaughter obtain ANP treatment, which he was told has about a 30 percent success rate.
"I was told there is now a clinical hold, that no doctor nowhere will be able to obtain this drug," he said. "Meanwhile, kids all over the world are dying right now. Is pumping them full of chemotherapy and radiation really the answer?"
There are others
California resident Ric Schiff, a detective whose family was likewise affected by tragedy, planned to join them by conference call.
Six months later, Crystin's tumor was 95 percent diminished, but the family was warned it would most definitely return.
After two cycles of ANP treatment, Crystin's cancer was undetectable but her neurological functions were deteriorating.
"The autopsy showed she was completely cancer free," said Schiff. "So the truth is, she didn't die of a terminal illness. She died from bad advice."
One of her drugs costs about $160,000 annually, according to LaFountain. Insurance doesn't want to pay for it, he said, and dozens of area businesses have stepped forward in helping to raise money for the family.
It's a story Dartmouth, Mass., father Phillip Norton knows all too well.
Norton's son Braiden, now 8, was diagnosed with a brain tumor called Pylocitic Astrocytoma shortly before his second birthday.
"What they were going to give to my kid was a poisonous joke," Phil Norton said.
"He was a normal kid who went to school, played with his friends," Norton said. "With the help of a nurse at school, we were able to treat him at home."
In February 2012, Burzynski discontinued Braiden's treatment since the tumor was virtually undetectable.
But in mid-December, doctors said Braiden's tumor was growing back.
"It was horrible news, but I figured we'd just put him back on the ANP," Norton said. "The FDA said no."
"As a parent, how can I put my kid through all that," he said. "Especially after I already know of a better way, a way we already know would work."
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