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Writing & Published Work

01238 Magazine
November/December 2007

Recovering Clayton

By Christina Alex

At three in the morning one day in early 2004, George Clayton Fatheree III woke up with the feeling that something was wrong. He turned toward his three-year-old namesake, his son, Clayton. Moments later, the child’s face contorted into a grotesque mask, his eyes shooting up to one side, then rolling slowly to the other side. “It’s okay,” then-28-year-old George comforted him, stroking his hair and holding him. “It’s okay.”

A minute or two later, the exhausted toddler fell asleep. George prayed for just a few uninterrupted minutes for his son. Five minutes later, the boy shrieked in pain as another seizure sent a spasm up his left arm, crossed his face, and gripped his right arm—“the most terrifying thing you’ve ever seen,” George recalls.

Hours later, after George left for work, his wife Azita, then 33, and a nurse spent hours force-feeding a mute and limp Clayton a liquid diet through a syringe; he’d lost the cognitive ability to chew, swallow, even defecate. But no matter how hard George and Azita worked, Clayton’s condition continued to deteriorate. They had tried every treatment they could find; nothing was helping their son.

The Fatherees had already taken Clayton to so many doctors that they’d lost track, researched every possible treatment, and devoted countless hours to his care. Now, with their conventional options exhausted, the Fatherees felt they had no choice but to consider a treatment that has prompted vociferous criticism from the scientific establishment, is not approved by the U.S. Food and Drug Administration, and could possibly worsen their son’s condition. But with Clayton fading away, did they really have a choice?

George Fatheree had always met challenge with aplomb. As a child of a biracial family in the agricultural working-class town of Chino, Calif., he handled the prejudice he encountered with prayer and understanding. Funny and likeable, George became a soccer player, an altar boy, Chino High School’s class president, and the first from his school to secure a spot at Harvard. Once in Cambridge, he found race relations at the college troubling and considered transferring before he met “the guys who became my roommates and my best friends.” Those relationships gave him an anchor at Harvard, and, with a concentration in government and religious studies, he ended up relishing his four years there.

Some years earlier, in Iran, on the eve of the 1979 revolution, eight-year-old Azita Karimkhany escaped with her parents and older brother to Orange County, Calif., with little more than the clothes on their backs. Eventually graduating from the University of California, Davis, with a degree in international relations, she would maintain her connection to her roots outside Southern California.

George and Azita met in the summer of 1994, when both happened to be vacationing in Jamaica. On the airport shuttle, George glimpsed the most beautiful woman he thought he’d ever seen. He introduced himself to Azita, and they became inseparable until their vacation ended. Over the next six months, George sent Azita a dozen roses every month, and for the next three years, they visited each other with nearly the same frequency. “I was the only kid in college with thousands of frequent-flier miles,” he says. Two months after his graduation, he slipped a ring in a champagne flute at Kuleto’s, an Italian restaurant in San Francisco’s Union Square. They were married on August 28, 1999, five years to the day after they met, in a Catholic mass in the morning and a Persian ceremony on a boat off Newport Beach in the afternoon.

They moved to New York, where George began consulting with Booz Allen Hamilton and Azita worked toward her master’s from Columbia’s School of International and Public Affairs. In 1998, George joined some Harvard buddies to create Internet start-up, intended to allow taxpayers to conduct government business online. But the dot-com boom was about to bust. GovWorks, which filed for Chapter 11 in January 2001, would become a watershed Internet-era flameout, immortalized in the award-winning documentary

After the stress of a failed start-up, the Fatherees left New York for Pasadena, Calif., where they hoped to start a family. While George consulted for McKinsey & Company, Azita worked with Columbia professor Gary Sick on his Middle Eastern affairs website and enjoyed an uneventful pregnancy, filled with prenatal yoga. Life was jam-packed with family and friends, dinner parties, and California sunshine. It got even better when their perfect seven-pound baby boy arrived on December 19, 2001—“the happiest kid you’d ever meet,” says George.

On May 14, 2002, Azita took her five-month-old for his second DPT (diphtheria, pertussis, and tetanus) shot. The vaccination produced a not atypical adverse reaction: a high fever, accompanied by Clayton throwing up and screaming. But the next week, en route to George’s fifth-year Harvard reunion, the new parents noticed something disconcerting. For up to a minute, Clayton would “hold his breath and turn blue,” George says. When they returned to California, Clayton’s episodes had become virtually nonstop. A frantic Azita rushed the infant to the hospital. George raced home from a business trip in northern Canada.

The doctors would diagnose Clayton with epilepsy, a condition defined by two or more seizures with no immediate cause, and pumped the child with phenobarbital, the oldest known epilepsy drug. The most common childhood neurological disorder, affecting more than one percent of the population before age 20, epilepsy is also one of the most potentially devastating neurological diseases. Epilepsy is “a spectrum [of symptoms and causes] within one person, let alone the population,” says Harvard Medical School professor of neurology Frances Jensen. “There are more causes of epilepsy than we can imagine.” As a result, treatment is almost always customized.

For five weeks after leaving the hospital, calmed by 30 milligrams of phenobarbital daily, Clayton was himself again. It didn’t last. After Clayton’s next vaccination, which the Fatherees agreed to at their pediatrician’s recommendation, the seizures recommenced. On June 23, 2002, Clayton was diagnosed with Lennox-Gastaut Syndrome, a life sentence of multiple types of seizures, which can lead to mental retardation and possible developmental regression.

Over the next two years, the frequency of Clayton’s seizures grew. George and Azita would rush their son to the hospital for days of drugs and testing. Heavily sedated, “he would lay in a hospital bed, and his pupils would vibrate back and forth in his eyes,” says his father. At nine months old, after an episode of nonstop seizing, the infant went mute.

It was impossible to help care for Clayton and meet the travel-filled demands of his job, so George left McKinsey. Wanting to try something public-service oriented, he became COO of the California Charter Schools Association, then enrolled in Loyola Law School’s night program in August 2003. Azita, meanwhile, used her research talents to search for treatments. In the process, she became part of a parent community that’s “like that underground train station during the Holocaust,” says Fia Richmond, the mother of a brain-injured child and founder of Children’s Neurobiological Solutions Foundation, which raises money for research. Frustrated by the uncertainty of it all, Azita and another mother established a support group at a local church.

The Fatherees consulted 11 neurologists, tried 13 anticonvulsant drugs, and put Clayton on a high-fat ketogenic diet that, at first, dramatically reduced the incidence of seizures. “We thought we had found our miracle,” Azita says. But after a month, the seizures returned. Doctors implanted a vagus nerve stimulator, a pacemaker-like device, in Clayton’s chest to quiet the abnormal activity in his brain.

The Fatherees also explored alternative options, from acupuncture to homeopathy, osteopathy, and even faith healing. Almost every new option brought initial excitement, then disappointment. “It’s very common when you start a child on a new drug or introduce some kind of new therapy that the child will do well for weeks or months,” says Jim Owens, assistant professor of pediatrics and neurology at Baylor College of Medicine. “We call it the honeymoon period. It wears off, and the seizures come back.”

George and Azita “were just so helpless,” recalls George’s classmate and friend, attorney David Brown. “They felt like there was nothing they could do.” The couple drew strength from their love for each other and their religious faith and tried to maintain a sense of normalcy in their lives. “They didn’t make you live it for them,” says friend Lisa Schenk, who recalls Azita giving Clayton mouth-to-mouth during a seizure one night at dinner, then returning to the conversation.

But despite George and Azita’s best efforts, by the spring of 2004, Clayton was in a quasi-vegetative state. “I didn’t understand how he was still surviving,” says George’s mother, Debi Fatheree. George and Azita were convinced that he would soon require a feeding tube. Then, through a holistic doctor, they heard about a last-ditch hope: A psychiatrist named William Rader who, through a clinic in the Dominican Republic, was offering a $25,000 human fetal stem cell therapy unavailable in the United States.

It sounded too good to be true. Described by Rader as painless, taking less than an hour, and with no known side effects, the treatment involves intravenously injecting fetal blood stem cells and subcutaneously injecting brain stem cells. Rader claims that the results are potentially miraculous: “The Fetal Stem Cell searches out, detects and then attempts to repair any damage or deficit discovered, as well as releases growth factors which stimulate the body’s own repair mechanisms,” he says. From Alzheimer’s to paralysis to ulcerative colitis, the list of diseases Rader says he can alleviate or cure makes stem cells sound like the panacea for humanity’s ailments. “We’ve had children who are blind and deaf that can actually see and hear [after the treatment],” Rader says on a video posted on his website—though none of those children appear on that video. Because of such claims, Internet bulletin boards are full of anguished postings from people who are paraplegic, who have epilepsy, who have loved ones suffering from Lou Gehrig’s disease, all wondering if Rader can help.

Rader, who is in his late sixties, would not answer questions for this article, and at one point during its reporting, Rader called an 02138 editor and appeared to threaten him. “I have people that I’m able to contact and have them deal with you,” he said. “I’m not just a regular doctor.” His biography is difficult to document. Rader graduated from the State University of New York at Buffalo School of Medicine in 1967 and has been licensed in California as a physician and surgeon since June 1968. He once ran “Rader Institute” clinics to treat eating disorders, and in the early 1970s, he worked at an alcohol treatment center called the Western Institute of Human Resources in Long Beach Calif. In the late 1970s and early 1980s, Rader served as an on-air psychiatrist for KABC-TV, a news station in Los Angeles. He was also a consultant for two episodes of the 1970s television sitcom All in the Family, and for a time was married to actress Sally Struthers, who played Gloria on that show.

Rader apparently learned about stem cell therapies by undergoing stem cell treatments, possibly intended to halt aging, at Dr. Alexander Smikodub’s Cell Therapy Clinic of National Medical University and Embryonic Tissues Center (also known as EmCell) in Kiev, Russia. According to Smikodub, Rader visited “about 10 times” between 1995 and 1997 and “underwent several courses of stem cell therapy.” Via e-mail, Smikodub said that Rader was intrigued by stem cells. “He tried to become our partner and investor, and many documents were signed … In May 1997, he demonstratively terminated our relations without having fulfilled any of his obligations.”

Early this decade, Rader launched the Cutting-Edge of Medical Invention Foundation, a nonprofit group that described itself as pursuing AIDS research. Earlier this year, Rader claimed in an interview with KABC to have found a cure for AIDS using stem cells. “I either am psychotic, a compulsive liar, or I am telling the truth,” he said. While he performs his stem cell treatments under the aegis of a company he started called Medra, he has also reportedly conducted business through firms called Mediquest, the Czech Foundation, and Dulcinea Institute.

Many if not most stem cell researchers and neurologists flatly reject Rader’s treatment. “The basis for this kind of therapy is a very misguided approach, thinking that stem cells have magical curative ability and that if you took a stem cell and injected it under the skin or intravenously, it would cure any of a series of illnesses,” says Dr. Arnold Kriegstein, who heads the Institute for Regeneration Medicine at the University of California at San Francisco. “This is not based on any kind of literature, any peer-reviewed scientific report of efficacy. There is no reasonable mechanism to explain how it could work.” The unknowns are as basic as the nature and origin of the cells Rader uses, whether they have been tested for contamination, and whether the body accepts or rejects them.

In the late 1990s, according to Fia Richmond, Rader treated three brain-injured children who were unresponsive to conventional treatments. One was an 11-year-old boy named Rory, whose mother “thought he was being more responsive,” after Rader’s treatment, recalls Richmond, who saw the child months later. “He always tended to tilt his head to one side, and she felt he was moving it to midline. I did not see a change.”

Richmond took her son, Palmer, to Rader in the summer of 1999. Instead of improving, though, Palmer started having seizures after the treatment, and it was months before the boy returned to his prior condition. “There were a lot of variables,” including a urinary tract infection from which Palmer was suffering, Richmond says now. “There was no control.”

Other patients thought they saw signs of improvement. A father named Kevin Caprio noticed that, after Rader’s treatment, his brain-injured daughter, Courtney, “went and looked for a chair to sit down in rather than just sit on the floor,” according to Dr. Dianne Caprio, his wife. Caprio, a dentist, says Rader assured her that, for the $25,000 fee, her husband could bring Courtney back as many times as needed. But he added a $1,000 “nurse’s fee” for the second visit, then upped it to $2,500. The Caprios stopped visiting.

“I asked at one point for a breakdown of what was actually in the IV,” Caprio says. “He never gave it to me. And there was never any follow-up.”

Still, Caprio admits, “there were no guarantees.” And now, “there’s always the lingering thought that maybe there was something in that IV that is harboring inside Courtney’s body and may not manifest itself for years to come.”
The Fatherees consulted experts and searched for clinical studies showing that stem cells had successfully been used to combat epilepsy; they found none. Still, afraid that they would otherwise lose their son, the Fatherees decided to talk to Rader.

“We had a lot of [initial] questions,” George says. “He satisfied very few answers. He was secretive and wouldn’t let us talk to other patients.”

Saying that stem cells might agitate Clayton’s brain, Rader refused to treat the boy until Clayton stopped holding his breath during seizures. In spring 2004, Clayton did stop holding his breath, and Rader agreed to let the Fatherees speak to a former client, a woman from Texas. “We listened to this mom who told a story about her child who had been brain damaged at birth,” George says. “[The parents] got stem cells for him every six months, and she saw tremendous developmental improvement. Listening to her words and her emotion … you couldn’t make this up.”

The Fatherees found themselves at a crossroads. Family and friends’ opinions ranged from admiration to heated opposition, and the weary couple had to choose. Based on the research they had done, they did not think the treatment would hurt Clayton, and they longed for the boy to experience joy again—to smile as he once had. “We went for it,” George says. In doing so, they broke with some of their fellow Catholics who believe that using cells from aborted fetuses is tantamount to baby killing. “What’s unethical is to discard them,” George says.

Dipping into savings and maxing out loans from Loyola Law School, they wired the funds to Rader’s account. In July 2004, they flew Clayton to the Dominican Republic. At that point, Clayton was on two anticonvulsant drugs and had had the vagus nerve stimulator implant for about three months.
At Rader’s clinic, which George says resembled any doctor’s office, Clayton was given a “simple saline solution” through an IV. Then Rader came in with a nurse who delivered what Rader had told them was fetal blood stem cells—it looked like “clear pink liquid”—through the IV into Clayton’s arm. After that came three injections of “fetal brain cells” directly into his leg. (A clinic spokesperson said that the cells come from fetuses aborted in the former Soviet republic of Georgia; not surprisingly, Rader has aroused the ire of pro-life activists.)

Within hours, George says, he saw a positive impact. “Clayton went to the bathroom by himself. Within a few days, he was tracking things [visually] and responding to sound. When I slammed the door, he looked.”

In the following days, the Fatherees took Clayton to New York University’s Comprehensive Epilepsy Center for a video EEG. The test found that Clayton was still having seizures. Six months later, the Fatherees took Clayton back to the DR for a second treatment at a cost of $8,000. Shortly after, they say, Clayton’s seizures stopped and have not returned. “When you see him, he does not appear to be having any seizures,” says friend David Brown.

But it’s hard to know for sure. Since no EEGs have been performed on Clayton since the NYU visit, “you really can’t say what’s going on,” cautions Dr. Evan Snyder, director of the Stem Cells and Regeneration Program at the Burnham Institute for Medical Research in La Jolla, Calif. The seizures could be ongoing but invisible. They could also have stopped on their own.

“Even with a bad epilepsy syndrome like Lennox-Gastaut, [in] about 10 percent of those patients, the seizures go away in time, unrelated to treatment,” says Dr. Jim Owens. Moreover, there’s no way to know if Clayton’s immune system accepted or rejected the cells, and the existence of concurrent treatments—Clayton’s other drugs and the vagus nerve stimulator—complicates the outcome.

But for the Fatherees, what matters most is that Clayton’s sunny personality has returned. In March 2005, two months after the second treatment, the three-year-old was laughing and giggling happily when Azita tickled him. He had also regained muscle strength and would eventually start walking.
“All he did for months was laugh—it took him awhile to figure out how to cry,” says friend Lisa Schenk. “He is more consistently happy than any child I know.”

“We got our kid back,” George says simply.

Since then, the Fatherees have taken Clayton to Rader’s clinic every six months for more injections. “He’ll let us know when and if we don’t need to go down there anymore,” George says.

The doctors remain cautious. “It’s a fascinating case history, certainly worthy of additional study,” says Dr. Orrin Devinsky, head of the NYU epilepsy center. “But does this show that stem cells work for seizures? No.”

Other doctors expressed “hostility” and “denial,” says Azita, who generally preferred to let her husband speak for this article. “Instead of jumping for joy the way we were, they were closing the door in our faces and not taking our phone calls any more.” One French–Canadian doctor at an epilepsy conference in Long Beach, Calif. heard their story, then “rolled his eyes, said, ‘That is impossible,’ turned his back and walked away,” Azita recalls.
Not long after Clayton’s first treatment, the Fatherees began to spread the word: William Rader had helped their son. Azita started spending several hours a day sharing Clayton’s story with desperate but hopeful parents, describing the treatment, stressing that there was no guarantee it would work for them.

“Azita and I are both certain that stem cells saved Clayton,” George says. “Even if they had not, we would want to let other parents know about the option.” That way, the Fatherees say, parents who feel as desperate as they once did can make up their own minds. Four parents from Azita’s support group have taken their kids to see Rader, and, according to George, one of them has become seizure free, though none have improved as dramatically as Clayton.

Two years ago, George wrote everyone he knew in support of California’s Proposition 71, which allocated $3 billion for stem cell research. Around the same time, Azita read a newspaper article about Robert Herring Sr., founder of cable network WealthTV, who offered Terri Schiavo’s husband a million dollars to transfer custody of Schiavo to her parents so they could have her treated with stem cells. After Azita sent Herring a video of Clayton, Herring dispatched a camera crew to film a 90-minute documentary tracing the boy’s progress over a year.

Rader was a reluctant participant, so Herring agreed to drop the project at any time if Rader wasn’t happy. “He was hesitant to talk to us,” Herring says. “I think he was even controlling Azita at some point, telling her not to talk to us about anything.” Rader’s website features a clip of that film with laudatory comments from Azita and added footage of himself. The clip does not disclose that, since January, Azita has been working for Rader for 10 hours a week, being paid to talk to parents. The Fatherees would not disclose how much Azita receives for her efforts.

George admits that there are questions about Rader’s work and methods but says that, for his family, the proof is in the pudding. “The bottom line is, this guy saved our son’s life and has helped a lot of other kids and families we’ve referred to him,” George says. “There’s a lot I don’t understand, [such as] why he’s not more proactive around doing scientific studies and [patient] tracking. But … the medical and scientific community is very threatened by this guy. These guys are investing billions of dollars testing mice, and this guy is saving people.”

About two years ago, Azita gave birth to a daughter, Caspian. She’s healthy, unvaccinated, and adores her big brother. Clayton started kindergarten at their local public school’s special-needs class this fall. He receives physical therapy, hippotherapy (in which brain-damaged children work with horses to develop motor skills), and music therapy. He has been medication free since last October.

“We’ve got very high expectations and hopes for him,” says George, who is now clerking for a federal judge in Pasadena before joining the law firm Skadden, Arps, Slate, Meagher & Flom, where he hopes to offer pro bono assistance to parents who feel their children have been damaged by vaccines. Clayton’s life has a purpose, he says: to offer hope to people around the world. “They see Clayton’s story and say, look at this little kid who’s gone through all this and still keeps fighting and getting better.”

And if Clayton can get better, why can’t their children?

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