Charlie’s Decline and Diagnosis
In July 2014, Charlie’s health began to shift noticeably. Once full of energy, he became constantly fatigued, and during a Porsche rally in Europe, his uncharacteristically reckless driving alarmed his family. Over the next few months, Mrs. Fago-Smith observed more troubling signs: Charlie’s gait was unsteady, and he often leaned to one side. Concerned, they sought medical help, and eventually, doctors delivered the devastating diagnosis—a malignant brain tumor.
The tumor, over two inches in diameter, was situated on Charlie’s brain stem, impacting all voluntary and involuntary neurological functions. Its location made it one of the most challenging types of cancer to treat.
“I said you have a brain tumor. We just hugged each other, and I said – we’re going to fix this, don’t worry. I mean, I just couldn’t function. I was just totally in a state of shock.”
— Elisabeth, after learning about her husband’s diagnosis
Encouraging Signs of Improvement
After beginning treatment, Charlie showed encouraging improvements. He regained movement, lifting his right leg and hand and even pointing regularly. These small but significant signs of progress renewed hope for Mrs. Fago-Smith and her family, reinforcing their determination to continue treatment.
Although antineoplastons (ANP) treatment helped reduce the cancerous portion of Charlie’s tumor, the challenging nature of his tumor’s location and size persisted as a major obstacle to his recovery.
Legal Barriers to Treatment and Regulatory Delays
Despite the promising effects of 4PBA and its derivatives, known as antineoplastons, further treatment was legally barred. As Charlie’s condition worsened without access to these therapies, he eventually passed away.
Mrs. Fago-Smith recalls the frustration and helplessness they felt while waiting for approval from the FDA. The agency took over three weeks debating the decision to authorize antineoplastons, despite knowing Charlie’s tumor was inoperable and untreatable by conventional methods.
Reflecting on Charlie’s Journey
While it remains uncertain if Charlie’s life could have been saved with faster approval, his story underscores the impact of regulatory delays on patients seeking innovative treatments. For Mrs. Fago-Smith, Charlie’s journey reflects both the potential of alternative therapies and the heartbreaking realities of navigating medical bureaucracy in the face of terminal illness.
“We’ve had some good days, we’ve had some bad days. From the inception of ANP into Charlie I literally saw changes. I saw him lift his right hand to his nose, which he wasn’t doing, I watched him lift his right leg up, during exercise I saw him point.”
— Elisabeth, recalling Charlie’s improvement after the initial treatment