November/December 2007

Recovering Clayton

George and Azita Fatheree seemed to have the perfect life: professional success, a loving marriage, a beautiful baby boy. Then a mysterious illness turned their son into a stranger.

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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