Posted on 12/13/2006 6:02:50 AM PST by grjr21
Daniel Kerner sits in his Portland hotel room, laughing as two characters argue in the film "Jimmy Neutron: Boy Genius" and moving in time to the music.
Hair is growing over the scars on his scalp, where Oregon Health & Science University doctors last month injected brain-making stem cells. It was the world's first such procedure, his doctors say, a risky and experimental trial to fight Batten disease, the brain-wasting illness killing the California boy.
In the four weeks since, his parents say, the 6-year-old has grown more lively each day. The milestones are small: More smiles, more eye contact, more words. But after years of watching Daniel lose his power to move and speak, Joanna and Marcus Kerner see a miracle. The other day, he said "OK, Mom," and the couple cried for 30 minutes. He said "Dad" for the first time in two years.
"He went down that staircase where he lost everything: his language, his ability to communicate," Joanna Kerner said. "He's taking those small steps back up. . . . It's a subtle awakening for our son."
At age 2, Daniel was singing nursery rhymes, talking in complete sentences and counting to 10, Joanna Kerner said. Then his language skills started to slip. Doctors diagnosed him with an "atypical autism," and the family moved on. Then Daniel started to have seizures.
In July 2004, Daniel came home from school one day and had to crawl off the bus. "He couldn't walk," said Marcus Kerner, 52. He spent the next two months in the hospital until doctors finally diagnosed his fatal illness.
"Here we are, rolling along, having our kids, having our fun," said Joanna Kerner, 42. "And then you hit a bump: OK, we can get through autism. Then you hit another bump: OK, we can get through autism with seizures. And then we hit this mountain, and we watched our family crumble."
Batten disease is a death sentence. Children with the illness can't make an enzyme that normally clears the brain of fatty substances, so the substances build up and grow poisonous. Children lose their ability to see, speak, think and move. They develop seizures and die by their teens. There is no cure.
Some scientists think a treatment lies in neural stem cells, an immature cell that can turn into other kinds of brain cells. A California company, StemCells Inc., harvested these cells from brain tissue of aborted or stillborn fetuses, then purified and grew the cells. In animal tests, the cells made the enzyme missing in Batten disease.
The U.S. Food and Drug Administration approved human tests in October 2005, on Marcus Kerner's birthday, and OHSU agreed to conduct the experiments this March. In July, the Kerners learned Daniel would be the first patient.
"We wanted to be first," Marcus Kerner said, "because we believe so much in what is going to happen here."
On Nov. 14, the Kerners kissed Daniel goodbye and sent him into the operating room with a fuzzy white bear toy dressed in green surgical scrubs. Pressing the bear's arm plays a recording of Daniel's 11-year-old sister, Lauren, chanting a prayer in Hebrew.
"They played it when they needed a prayer in the operating room," Joanna Kerner said.
Eight times, doctors cut through Daniel's scalp, drilled a hole in his skull and injected stem cells into the brain with a computer-guided needle. The surgery lasted eight hours.
The operation was risky. "It's totally unique to inject purified neural stem cells into the human nervous system," said Dr. Nathan Selden, the lead surgeon. "So we don't know if it's going to work or not."
Brain surgery carries its own risks, including seizures, already a serious health threat for Batten children. The whole trial, which will include up to five more children, is designed to prove that the treatment is safe, not that it heals.
Daniel bounced back quickly, spending just one night in intensive care and five in the hospital. In the 28 days since the operation, he has had no fever, no seizures, and seems to be improving, his parents said.
"When we saw the postoperative MRIs and looked at Daniel's brain, it's as if a beautiful light was filtering through Daniel's brain where the cells are," Marcus Kerner said.
What happens next is a mystery. It will take months, maybe years, to see if the stem cells are truly helping Daniel, doctors said. They said it's realistic to hope the treatment may stop the progression of the illness. But it's even possible that the stem cells could reverse some of the damage, either by clearing out the gathered toxins or by turning into new brain cells.
"We have hope that our son will grow and his language will re-emerge and his motor skills will re-emerge and we'll have another little boy playing on our block," Joanna Kerner said. "Now there's hope. We finally got our wish."
The family plans to return to Orange County on Friday, where Daniel will be reunited with his sisters Manya, 24, and Lauren and brother David, 9. But the Kerners will return often to OHSU for check-ups.
"Over the next year, Portland will be our second home," Marcus Kerner said. "In fact, it's already our second home."
While here, an Eastern Oregon man met the family and invited them to his ranch for Thanksgiving, Marcus Kerner said. Owners of several restaurants have cooked special meals for the boy. Strangers have stopped the family on Portland streets to ask about Daniel and said they would pray for him. They join people worldwide praying for Daniel, his parents said, including cloistered nuns in Los Angeles, Mormons in Orange County, rabbis across the country and a Bible study group at the Pentagon.
The Kerners will also go home and pray, lighting a candle on Friday, the first day of Hanukkah.
"December in the Northern hemisphere, the time of Hanukkah, is the darkest time of the year," Marcus Kerner said. "And that is why miracles shine so brightly."
The media can be first class a tool evil.
The Left shamelessly recruits damaged innocents for its front-lines assualts again.
Hey, I have an idea! Someone ought to write a book about how the Western Left uses terrorist tacticts in psychological, legal, and economic warfare! The true face and aims of terrorism might just start to become clear in that case.
My family was discussing the topic of embryonic stem cell therapy a few months ago, and my 16 y.o. son made me prouder of him than I ever have been. My wife has sadly bought the hype on the subject, and our son told her, "If you ever have to choose between letting me die, and embryonic stem cell therapy, I want you to know that I want to die".
My wife got mad at me and accused me of "putting that idea in his head", and I told her that, no, actually he and I had never discussed it; but while we were on the subject, ditto what he said for me.
At least the stem cells can be taken from stillborn babies. My husband and I recentl lost a baby at 20 weeks and if we had been asked to donate some of her tissue, we might have been able to consent.
I pray that this boy continues to heal. He is in no way responsible for the abortions of those babies.
Wouldn't it be good if Catholic hospitals and universities devoted a major effort to obtaining embryonic and fetal stem cells licitly?
Mrs VS
It would be interesting to see when he received vaccines.
Just WOW!....Kudos to your son!
I'm thinking the same thing.
Wouldn't it be good if Catholic hospitals and universities devoted a major effort to obtaining embryonic and fetal stem cells licitly?Yes, it would be. I also wish they would work with Congress within the next two years to send a bill to the President for federal funding that he could sign in good conscience, and defuse this hot-button topic.
So sorry about your loss and thank you for your compassionate heartfelt wish for the little boy.
Scientifically, it's hard to imagine why. Embryonic stem-cell research hasn't shown much promise, and has produced some notorious medical disasters for test patients. That's why some keep pushing for government support for embryonic research: Private money is staying away, and is going to adult-cell research instead, which has already shown therapeutic successes.
Embryonic-cell research funds are a form of corporate welfare, abetted by a big push from the abortion industry, which wants to supply the bodies. The poltical abortion movement needs embryonic research promoted as widely as possible, because popular support for abortion has been tanking with the widespread use of ultrasound scans.
I don't think Catholic hospitals and universities need to cut deals with Dr. Frankenstein.
"Brain surgery carries its own risks, including seizures, already a serious health threat for Batten children. The whole trial, which will include up to five more children, is designed to prove that the treatment is safe, not that it heals."
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Why is there this need to be 'safe' w/ dying children? I'll bet it is onerous regulations preventing them from going strait for the cure 'safe' or not. :)
What happened to the Hippocratic Oath.They're not Even trying to cure him
Phase I in any FDA approved therapeutic trial is to prove that the treatment doesn't cause harm. The boy has a fatal inherited disease.
Why is there this need to be 'safe' w/ dying children? I'll bet it is onerous regulations preventing them from going strait for the cure 'safe' or not. :)
They don't want to sued for a teratoma either. I'd like to see them try umbilical cord blood for some of these fatal inherited diseases.
Actually, there have never been any human trials using embryonic stem cells. These are fetal stem cells - the baby was at least 8 weeks along, although there's not much info on the harvest or processing of the brains or the "purification" process.
In contrast, there's quite a bit of research - and reports on the research and methods - showing that neural stem cells are available from the cells harvested from umbilical cords. Wharton's jelly cells have been "easily" (http://stemcells.alphamedpress.org/cgi/content/abstract/24/3/781) induced to transform into neural stem cells and proliferate indefinitely in the lab. In animal models, the cells are being evaluated for use in treating Parkinson's and other neurological disease.
http://stemcells.alphamedpress.org/cgi/content/full/21/1/50
Perhaps, now that "Stem Cells, Inc." researchers believe that they know the specific markers that are to be found on the cells they believe to be useful, they can turn their efforts to more ethical research. And more accessible stem cell sources. Even with 1 out of 3 babies aborted in this country, most are aborted at the embryonic stage (1st trimester), and so there are many, many more opportunities to harvest ethical stem cells from umbilical cords.
And we don't have to kill anyone for it.
bump
StemCells, Inc. Announces First Human Neural Stem Cell Transplant, Wednesday November 15, 7:30 am ET Phase I Trial of HuCNS-SC(TM) to Treat Batten Disease Advances
Our mission is to harness the great promise offered by stem cell technology towards the treatment, and possibly cure, of a broad array of intractable human disease for the benefit of patients, family members, physicians and society in general.StemCells, Inc. is focused on the discovery and development of stem cell therapeutics to treat damage to or degeneration of major organ systems such as the Central Nervous System, Liver and Pancreas.
We are a world leader in the discovery and development of human neural stem cell technology using cells derived from adult (i.e. non-embryonic) brain tissue.
We use a proprietary process to isolate, purify and expand rare candidate stem cells found in adult human tissue.
To date, we have discovered the human neural stem cell as well as a population of rare candidate stem cells found in human liver and pancreas.
We have over forty issued U.S. patents, plus foreign equivalents to some fourteen of our U.S. patents and applications, for a total of over one hundred and seventy individual patents world wide.
Our scientific founders, who are also members of our Scientific Advisory Board, are recognized as world leaders in stem cell biology.
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