Ride For Life: ALS patient dies after Chinese stem cell surgery

A New Hampshire man who shared a Beijing hospital room with Alabamian Wilbur Newton last week and underwent the same controversial surgery has died.

Ronnie Abdinoor, 47, had surgery on the evening of Oct. 20 U.S. time and never left the hospital, said his friend George Ead of Massachusetts, whose wife, Hannah Ead, took care of Abdinoor and accompanied him to China.

Like Newton, Abdinoor was suffering from amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. The fatal, incurable disease causes a creeping paralysis and can take from two to five years to kill its victims. Americans diagnosed with it have recently started going to Beijing for experimental transplants of cells from fetuses aborted in the second term.

"I think he saw it as his only chance," Ead said. "He was pretty brave about it."

"He really thought he was coming home walking. He really did," said Abdinoor's sister, Elaine Leavitt of Massachusetts. "He never lost faith. He had hope and he kept telling me he was going to beat this thing."

Leavitt, Ead and Stephen Byer, a Wisconsin man who sets up surgical appointments in Beijing for American patients, said they were told an autopsy indicated Abdinoor died of heart failure. Ead said he was told the autopsy also revealed some pneumonia.

Abdinoor complained of not feeling well shortly after going through the procedure, in which a team led by Dr. Hongyun Huang drilled two holes into the front of his skull and then transplanted cells from fetuses aborted in the second term.

He complained that his speech had gotten worse. He also was congested and doctors had to run a suction tube down his nose. When that happened, he complained about not being able to breathe. His pulse rate remained high even several days after surgery, more than 130 beats per minute, and his blood pressure was also high.

Byer said he has notified patients scheduled to leave for China within the next couple of months.

"Everybody who has responded has said the same thing, 'It doesn't affect my decision.' Someone can die from rotator cuff surgery," he said.

One other ALS patient had died of heart failure about two months after surgery.

However, others have said their conditions have improved.

Newton and another Clarke County man, Kevin Lyles, have been released from the hospital and were reporting progress. Newton was able to make a fist for the first time, raise his arm from the mattress onto his stomach and stand better. Lyles had recovered some of his ability to speak, was able to climb stairs without exhaustion and was told he could go home.

The families of both Alabama men could not be reached for comment Thursday.

Even Abdinoor, within hours of surgery, was able to wiggle his toes much more.

"If he were standing here today, he would go for it all over again," his sister said. If he hadn't tried it, his health was just going to decline further until he died anyway, she said.

She said his death has not shaken her faith in Huang's procedure.

"There's no cure," she said. "This is giving people hope. People have hope now. When you lose hope you lose everything. You go downhill fast. ... If this is the hope for ALS I would say go for it."

Abdinoor farmed, raised trout and ran a nine-hole golf course. He was also an avid outdoorsman with "friends of all ages," Leavitt said. In Beijing, even when he was clearly suffering after surgery, he amused the medical staff with his attempts to speak Chinese and kept other Americans laughing with his tongue-in-cheek efforts to find a Chinese girlfriend.

Leavitt said it hurt to think of her brother dying so far from home and contends that the U.S. and other countries ought to practice the surgery here.

"So people don't have to go to China," she said. "Maybe this way some more people could have it done. Not too many people could afford to go to China."