Namak Magazine - Discarding Debate...

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Discarding Debate to Create a New Beginning:
How one family’s desperation led them to stem cell therapy
by Samira Jafari Simone
Namak Magazine, Spring 2006 - pgs. 16-17

These days, embryonic stem cells are synonymous with controversy. They are a hot button issue with politicians, activists on both sides of the picket line and religious leaders, and even tend to fuel heated talks around the dinner table. Should embryos be destroyed to save the lives of others? Is human cloning just around the corner?

But to one California family, stem cells have transcended debate and serve as a lifeline. Azita Fatheree won’t get into the moral tug-of-war over embryonic stem cells. To her, they were simply the cure for her son’s debilitating seizures. Good parents don’t allow skeptics and controversy to get in the way of saving their child, she believes. She says, “Nobody knows your child better than you do… There’s no expert on your child other than you.”

Clayton Fatheree joined the world on Dec. 19, 2001. A lively, healthy bundle, he came with an inherent curiosity. Doctors lauded his progress, saying the infant was ahead of expected development. He thrilled his father, George, when he pulled his tiny lips together to mimic a whistle. He was a happy baby, giggling, playing, his eyes absorbing it all. He loved a good tickle.

Sadly, the gurgling, bouncing and smiles faded into twitches, spans of blankness, and stillness. After a mere five months of “normal” life, epileptic seizures took hold of the infant, draining him of movement, emotion, and appetite.

Clayton was suffering from Lennox Gastaut, a severe form of epilepsy that sparks seizures typically before age 4. The syndrome causes body stiffness, staring spells, and muscle jerks among other debilitating symptoms, according to the National Institute of Neurological Disorders and Stroke.

In the months after his first episode, Clayton endured 30-100 seizures a day. By 11 months, he stopped eating, moving and appeared void of emotion. “The first five months of his life, he was perfectly healthy. He was developing normally, if not quickly,” Azita says. “At five and a half months… Time stood still for him.”

But the Fatherees refused to allow the seizures to claim their son. The family began exploring treatments. First it was traditional drugs, then new drugs. And they all failed. When the doctors suggested combinations of medication, the Fatherees felt their trusted physicians were merely grasping at straws.

They tried an implant, similar to a pacemaker, intended to quell the seizures. When that failed, they sought non-medicinal alternatives, including acupuncture. Nothing would bring their once lively, inquisitive little boy back. Epilepsy had robbed Clayton of his first words, his first steps, his first bites of solid food.

Home movies show an absent Clayton, no longer able to do the most automatic tasks, such as swallowing. His nights were starved of sleep, the constant seizures becoming his literal nightmare. Sustenance came through a dropper.

All the while, Azita and George refused to listen to the doctors who threw up their hands and said there was no hope. “A pediatrician, when Clayton was two, said, ‘You shouldn’t have any hope. If you’re lucky, at some point in his life he may be able to feed himself,’” says Azita. “That is infuriating and inhumane.” Fueled even more by the incredulous physicians, the family pressed for new alternatives.

That’s when they stumbled on a treatment that would send them to foreign soil. Through a neurologist, the Fatherees contacted Dr. Richard Rader, a Malibu, California-based stem cell expert who oversees embryonic stem cell injections at a facility in the Dominican Republic.

They were warned, as with many new treatments, unknown risks were involved. Were the stem cells pure? Was the clinic reputable? What were the long-term effects?

At this point, George and Azita, neither a physician by profession, had digested volumes of information about their son’s condition and researched enough about traditional and unorthodox treatments to go should-to-shoulder with any skeptical doctor they encountered - and there were many. Even family members, who had suffered along with Clayton’s parents with each passing day, were alarmed about the boy undergoing such a controversial treatment.

But the embattled Fatherees stood firm by Dr. Rader and their difficult decision. “If we didn’t do something, we could have lost Clayton,” Azita says. “He was seizing and losing weight. For us, there was no choice.” She adds that while she and her husband were apprehensive about possible long-term effects, they knew they would have to take on those issues as they came up. “We thought… he could get x-y-z, we’ll deal with x-y-z if it should happen — we don’t have a choice right now,’” Azita says. “We met our threshold.”

In July 2004, the two-and-a-half-year-old Clayton had his first embryonic stem cell injection on the Caribbean island. The family anxiously awaited any negative side effects in the weeks that followed. None came. What arrived was facial movement, turning of the head, a cheerful squeal and more. Soon his smile returned, as did the giggles.

Encouraged by the improvements, Azita and George returned to the island every six months so Clayton could receive additional injections. With each one, their son regained another ability — swallowing, standing on his own, picking out a favorite toy, engaging in a game. The Fatherees don’t take any bit of improvement for granted. “Day by day, we’re looking for his milestones,” Azita says. “We’re not comparing him to anybody but himself.”

He’s had four treatments so far. Azita says determining how many more he will need during these vital years of his development is the most difficult part of the process. In the meantime, the trio is looking forward to a new addition to the family. Azita was eight-months pregnant at the time of her interview with Namak.

After extensive genetic testing, the roots of Clayton’s epilepsy remain inconclusive. The Fatherees, are looking forward to a healthy baby. “I think Clayton could really benefit from a sibling, not because I want his sibling to have responsibility over Clayton,” Azita says, “but I think that he needs a buddy.”

Clayton chose us as his parents and he wanted us to be the ones to work through this with him,” she adds. “To have another one, that’s part of our journey I guess… We’ll love her just as much.”

Azita divides her time from helping Clayton and working from home as a researcher to heading a support group for parents with children diagnosed with epilepsy. The couple has no immediate plans to become stem cell lobbyists in Washington; their primary mission will always be to support Clayton. However, they believe Clayton’s story has generated much support for stem cell research.

“We’re trying a different avenue… We want to mobilize other parents and I think parents will be the force to change politics.”

Additional information available on Dr. Rader’s research at www.medra.com. The National Institute of Neurological Disorders and Stroke’s website is www.ninds.nih.gov.