Man pursues a miracle in China
Experimental gene therapy offers ALS sufferer new hope
By Russell Nichols
DEMOCRAT WRITER
Deep run the scars on his head where his hair used to be. His hair is growing back now, but the two marks at the top of his skull remain as reminders of his pilgrimage east, the miracles he saw there and the ones he brought back with him.
"It's been a long trip," Michael Thomas says as he sits beside his wife, Kim, and his daughter, Mandy, on the sofa in his house in southwest Leon County. He returned Dec. 2 from Beijing, China, where he underwent experimental treatment for ALS.
Prior to the trip, the 47-year-old who was diagnosed with ALS in June couldn't wiggle his toes or stand without support, and he lost 30 pounds. With ALS, also known as Lou Gehrig's disease, motor neurons deteriorate, and, over time, muscle movement diminishes. Patients become paralyzed and usually wither away in half a decade or less. Doctors say Thomas - and the 30,000 others in the United States who have it - has three to five years left.
Prior to the trip, Thomas believed them.
ALS sufferers from all over the world have made the trip hoping that the fatal disease may be reversed or stabilized. For the past two years, Dr. Hongyun Huang has converted Beijing into a medical Mecca despite the controversy surrounding his unproven stem-cell operation. Patients have had mixed results. Some have seen improvements within days; some have experienced the same problems as before surgery. Others have died.
The trip and surgery cost $30,000. Thomas had no idea where to get the money, but with the help of friends and donations from outside sources, he was able to get the money he needed and then some.
Juhan Mixon, who has known Thomas for 11 years, established a trust fund and raised more than $35,000 in five weeks. He says the money came from all over: from businesses, from Tallahassee residents, from friends, from strangers, from ALS patients who wished they could go.
'A blessing to so many'
"The outpouring by citizens that we didn't even know was amazing," Mixon says and adds that Thomas' trip has spawned an ALS support group. "It has been a blessing to so many people."
Thomas knows these strangers and friends made his journey possible.
"If it hadn't been for them, we wouldn't have been able to go," he says. "A lot of them I didn't even know."
In that sense, the trip was a miracle in itself.
Thomas and his wife arrived in Beijing on Oct. 31.
"Welcome To The New Home" read a red banner hanging over the doorway of the hospital on the outskirts of the city.
Huang, a neurosurgeon, has been operating on patients who have spinal-cord injuries, Parkinson's disease and ALS. He says he has performed more than 400 surgeries in the past three years.
The operation goes something like this: Huang injects millions of olfactory ensheathing glia (OEG) cells - the cells that help determine smells - from second-trimester aborted fetuses into the brain or spinal cord. The fresh cells, in theory, become tomb raiders, flocking to the infected regions and waking up the deceased neurons.
Some questions raised
No clinical data support transplanting OEG cells, no tests have been performed on animals, and Huang's findings have not been published, says Dr. Wise Young, chairman of cell biology and neuroscience at Rutgers University in New Jersey - where Huang did postgraduate work four years ago.
Even so, about 300 Americans are scheduled for operations through October 2005, says Steve Byer, a Dodgeville, Wis., resident whose son had the surgery in July. Byer has become the middleman for American patients who want to go overseas.
He says at least 600 others are waiting to mark their calendars. ALS progressively paralyzes patients, so Byer doesn't schedule surgeries more than a year in advance.
During the two weeks before Thomas' date with the drill, he would undergo massage therapy, acupuncture and acupressure. Doctors recommended that he stay indoors to avoid any sicknesses. Before the surgery, an assistant shaved his head, as was procedure. Thomas, wearing a white robe, walked into the surgery room Nov. 15.
At 11:45 a.m., it began.
A daunting procedure
With a blue marker, the doctors drew lines all over Thomas' bald head, tracing his nerves to figure out the best place to inject the cells.
"Close your eyes," the doctors kept telling him. But Thomas kept his eyes open. An IV pump was in one hand and a blood-pressure cuff on the other arm.
They draped a cloth over his forehead to divide his dome from the rest of him. Thomas heard the drill before he felt it. Two hands held his head as still as possible as the drill punctured his scalp.
When the drill penetrated his skull a second time, his entire jaw vibrated. Then Dr. Huang, hovering over him, injected the stem cells into the two holes.
Squish. Squish. Squish.
The noise of the cells in his head, he says, sounded like swishing water in your mouth.
"You're putting the cells in?" Thomas asked, his eyes still open. He could see the doctors operating above him through the sheer cloth, shuffling back and forth with equipment and uttering commands to each other in Chinese.
"Yes," the doctor said.
"How many are there?"
The doctor said about 2 million.
Network of support
Kim - wearing a red shirt with Chinese characters that translated to "long healthy life" - was in the community room during this time. Other spouses came to comfort and console her. The three operations that took place earlier that day eased her apprehension.
"To know that they went in surgery and came out fine," she says, "I knew Mike would be OK."
At 12:47 p.m., it was over.
Thomas lay in his bed after the surgery when the nerves all over his body started running rampant. It lasted for a couple hours.
"It was a little unnerving at first," Thomas says. "My skin was just jumping everywhere." It was normal, the doctors assured him.
The reckoning came two days after the surgery.
"I was standing and shaving, and I realized I wasn't holding onto anything," Thomas says.
Before, he would have to hold onto the something for support. His balance had improved.
He had two weeks before he was scheduled to return home. During the day, it was back to massage therapy, acupuncture and acupressure.
Shared triumphs
At night, it was word games and UNO in the community room. In this facility, families sharing similar fates quickly became friends. At least 17 families were there, Kim says. The wives even prepared a Thanksgiving feast with turkeys and Peking duck. Thomas still keeps in touch with some of them, sharing in their triumphs as they share in his own.
"We saw a lot of small miracles over there," Thomas says.
Steven couldn't hold his head up. Al couldn't move his hand. Betsy struggled with speech. Each of them showed signs of improvement, Kim says, after the surgery. Betsy was even able to play the word games in the community room with the others.
Not all the patients could spread good news.
For instance, doctors warned Greg that he was too sick to make the 29-hour flight to Beijing. But he went anyway; upon arriving, his wife insisted on the surgery. He died shortly after, Thomas says.
Thomas' journey is far from over. It's still too early to tell whether the treatment worked. He still has a drop foot like he did before the surgery.
But less than two weeks after his return, he says his muscles feel bigger. He actually feels sore, which he hasn't felt in a long time. Now he can walk around the living room without the brace that supported his leg a month ago.
Back to regular life
"It's up to me to make it all work," Thomas says.
Because Huang is so busy, he doesn't have the time to be every patient's personal doctor. He assigned Dr. Yancheng Liu to work with Thomas on a day-to-day basis. After Thomas' surgery, "his body had a good balance ability and his hand became more stronger than before," Liu wrote in an e-mail. Thomas maintains contact with Liu, keeping him informed on any progress or lack thereof.
Every day, Thomas mounts the Total Gym in his bedroom and begins his daily routine. Dr. Diana Byrd, his local doctor, whom he sees once every two weeks, has been overseeing his physical therapy, making sure he maintains strict exercise habits. Other than that, it's all about getting back to his regular life, being a husband, a father and a supervisor at Tallahassee Water Utility, where he's been on sick leave since September.
He says he will return in January if he feels up to it. Kim says she can see changes.
Thomas has more energy now, she says. He sleeps less. He can stand without holding onto anything. Every day, he exercises the muscles doctors predicted would disintegrate.
"I can look at him and tell a difference," Kim says. She still rubs his feet a lot. The area below his knees used to be ice cold because of the lack of circulation, she says, but blood has been returning to his lower leg.
"I don't know if things are coming alive down there or what," Kim says. "They do tell you that when you lose it, it never comes back."
In that sense, any improvement is a miracle in itself.
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