Hope for O.C. boy rides on stem cells

Procedure using fetal tissue aims to treat rare illness.
From staff and news service reports
Daniel Kerner's parents knew the experimental brain surgery was risky, but without it the 6-year-old surely would die.
Last month in Portland, doctors for the first time transplanted stem cells from aborted fetuses into his head in a desperate bid to reverse, or at least slow, a rare genetic disorder called Batten disease. The so-far incurable condition normally results in blindness and paralysis before death.
Doctors don't know if the neural stem cells taken from fetuses donated to a nonprofit medical foundation by women aborting early-stage pregnancies will save Daniel's life. But the boy has sufficiently recovered from the 8-hour surgery to return to his Trabuco home Friday. The Jewish holiday of Hanukkah begins that night.
“We don't think that is a coincidence,” said Marcus Kerner, who said a deep faith in Judaism and long hours of prayer prompted the family to volunteer Daniel for the risky procedure. Daniel was diagnosed two years ago and has since lost the ability to walk and talk. Daniel is the first volunteer of an experiment that plans to operate on five more afflicted children over the next year.
“He was a little boy who was basically waiting to die, now he's waiting to get better,” said Kerner, who also said Daniel recently called him “Dad” for the first time in two years.
“He's been trying to say more and more each day,” Kerner said, adding that Daniel is anxious to return to Robinson Elementary School in Trabuco Canyon, where Daniel is vice-president of his second-grade special education class.
The stem cells injected into Daniel's head aren't human embryonic stem cells, a research field President Bush has limited because of moral objections. Nonetheless, the new cells in Daniel's brain do carry their own ethical baggage.
Anti-abortion groups oppose the research, which was banned from federal funding by President Reagan from 1988 until President Clinton removed the prohibition in 1993.
“They are trying to give an aura that this is good when this is the most grisly of examples that can be given about abortion,” said Gayle Atteberry, exectuive director of the Oregon Right to Life, the state's leading anti-abortion group. “They are taking the brains from babies.”
Marcus and Joanna Kerner, who have three other children, said the controversy is something the family has discussed.
“We've lost two children to miscarriages,” Marcus Kerner said. “We would have much preferred that those babies could have in any way helped another child to live.”
Research opponents argue that beyond their moral opposition, there is long list of failed fetal tissue transplant experiments – most notably those involving hundreds of Parkinson's patients over the last decade in which none have shown dramatic improvements.
Martin McGlynn, the chief executive of Stem Cells Inc., the Palo Alto-based company that developed and owns commercial rights to the experimental Batten treatment, said the current operation differs dramatically from previous fetal tissue transplant attempts. The company is paying for Daniel's operations.
McGlynn said Daniel received “highly purified” stem cells selected for their ability to obey commands from the brain to replace damaged cells. McGlynn said previous transplants were crude by comparison because those researchers simply injected fetal brain tissue with little selectivity of needed cells.
Batten disease is caused when genetic defects fail to make enzymes needed to dispose of waste made by brain cells. The waste piles up in the brain and kills healthy cells until the patient dies. Most victims die before they reach their teens.
The company's idea is to inject the sick kids with healthy, fetal neural stem cells that will “engraft” in the brain, which will direct the new cells to turn into cells able to produce the missing enzymes.
Doctors were concerned about rejection of the implanted cells, but Daniel hasn't shown any adverse effects, his father said.
“We're very grateful to all of his doctors,” Marcus Kerner said. “There are a lot of people from all walks of faith praying for this child, and their prayers are being answered.”
Batten afflicts roughly 3 out of every 100,000 children in the United States. There is no known cure or treatment.
http://www.ocregister.com/ocregister/healthscience/abox/article_1380593.php

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