Austin on KOMU TV 8 Columbia Missouri
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Austin’s Story in the Columbia Daily Tribune:
TRIBUNE COLUMN
Local couple brings debate over stem cell research to life
By TONY MESSENGER
Published Wednesday, May 11, 2005
In the world of miracles, the line between faith and hope is razor-thin.
Jenny Wade walks this tightrope every day. She hopes for a miracle that will cure her son. She prays he can live a normal life free from pain. In the meantime, she’s not going to leave a single stone unturned as she searches for an earthly remedy for what ails 8-month-old Austin.
In many ways, Austin is not much different from other infants his age. He eats and sleeps a lot. He has the occasional discovery that his parents treat like man landing on the moon. On Monday, he sucked on his right hand for the first time. Previously, his left hand had been the only one he reached up to his mouth. In Austin’s case, the development was big news.
Austin is lucky to be alive. A little more than a month after he was born, doctors determined he suffered from a rare vitamin K deficiency that led to serious bleeding in the brain. Most newborns receive a vitamin K shot – some take the medicine orally – at the hospital when they are born. The vitamin helps blood coagulate. Austin was born at home and never received the shot. He was the one in 10,000 afflicted by the deficiency. On Oct. 15 last year, doctors at University Hospital removed part of his skull to repair his bleeding and swelling brain.
Mom can’t look at the pictures of her little boy from before and after the surgery without choking up. He looked so normal in the first one, his eyes wide open, a tuft of dark hair on his head. He was perfect. Now he suffers from cerebral palsy-like symptoms. He has little motor coordination. He doesn’t track objects with his eyes. He doesn’t sit up. He can’t roll over. His medicine has contributed to weight gain. At eight months, Austin already weighs 26 pounds.
Later this month, Jenny and her husband, Darin, are hoping their bundle of joy becomes a medical miracle.
They’re betting on a technology that legislators in Missouri and elsewhere are treating like a political hot potato: stem cells.
Research using stem cells – the building blocks of our bodies that hold reproducible DNA – has promise for all kinds of cures to horrible diseases. Some believe stem cell research will some day find cures for diabetes, Alzheimer’s and even some forms of cancer. Already, umbilical cord stem cells are being injected into certain leukemia patients in the United States with some success. The cells can regenerate and replace unhealthy cells with newer, healthy ones.
But stem cell research also has the dark cloud of human cloning and the abortion debate hanging over it. One type in particular, embryonic stem cells, is seen by forces in the anti-abortion movement as amoral because to harvest them the embryo must be killed, and that, they say, is murder.
The Wades are Christians, and that’s why they say they’re comfortable with the decision they’re making. Later this month, they will travel to Tijuana, Mexico, to the clinic of Fernando Ramirez, a doctor who uses umbilical cord stem cells to treat various nervous system diseases. The doctor claims he obtains umbilical cords, only from healthy babies, donated by mothers. It’s a fairly new practice that, in fact, is encouraged by doctors in the United States. But in this country, umbilical cord stem cells are only approved for treating cancers and other blood diseases. Ramirez’s work is considered experimental.
That doesn’t deter a mother who loves her little boy.
“You just want to do anything that you can for your child,” Jenny says.
Besides the cost – $12,000 per treatment, and that doesn’t include the travel – there’s risk, and there are no guarantees. The Wades have talked to other parents who have gone to Ramirez for treatment. They were sent to him by a doctor in California named David Steenblock. The doctor has been disciplined by a medical board in that state. His connection with Ramirez is criticized by a medical watchdog group’s Web site called Quackwatch.
The Wades know this, and still they have borrowed money from family to seek help for their son. Other children with similar conditions whose parents they’ve talked to have shown improvement, they say.
To the Wades, anything they can do for their son is worth the effort.
“There’s no guarantees,” Jenny says, “but everybody I’ve talked to has had good results. If it even helps him 5 or 10 percent, that’s good enough for me. He’s just been through so much. It just breaks your heart.”
One simple shot at his birth likely would have made all of this unnecessary. But now, the Wades are hoping that another shot, this one very expensive, will give them the hope that Austin will some day have more discoveries. They are Ground Zero in a new medical world that erases the line between faith and hope.
“We’re just praying for a miracle,” says Jenny’s father, Ron Rold.
With a little boy’s life at stake, they’re not splitting hairs over who gets the credit.
They’ll take their miracle anyway they can get it.
Tony Messenger is a columnist at the Tribune. His column appears on Sunday and Tuesday through Thursday. He can be reached at 815-1728 or by e-mail at tmessenger@tribmail.com.
