BONITA SPRINGS — Jimmy and Jennifer Bell were scrambling to save their 5-year-old-son, Jason, last fall.
Shell-shocked with a diagnosis that their youngest child had primary pulmonary hypertension, a rare lung disorder, they decided to take a chance. If not, a heart-lung transplant would be their son's only chance.
They put their trust in a Southwest Florida cardiologist, Dr. Zannos Grekos, more than 1,000 miles from their Texas home. They learned Grekos performs an experimental stem cell therapy that possibly could help. That's despite a lack of clinical studies and scientific papers.
The U.S. Food and Drug Administration hasn't approved stem cell therapy despite a buzz of optimism of its potential for repairing damaged tissue.
"I was willing to do anything to give my son a fighting chance," said Jimmy Bell, 43, who owns a landscaping company in Keller, a suburb of Fort Worth. "When you are given no other option, you've got to try something."
The treatment would involve a trip to Bonita Springs where Grekos has his practice, Regenocyte; a trip to the Dominican Republic where the treatment would be done, and an up-front payment of $57,000.
"They looked at his medical records first. They didn't know if they could treat him," Bell said. "Once they agreed to treat him, I talked to Grekos. It was the greatest news in my life. I broke down. I just knew this was going to be the miracle to save his life."
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The family wired the money in late October 2011 to a Regenocyte account in the Dominican Republic, according to a copy of the paid invoice furnished to the Daily News.
They anxiously waited for the call beckoning them to Florida. That's where Jason would have a bone marrow aspiration as the first step in the therapy.
A pediatric cardiologist was needed to do the bone marrow aspiration. Regenocyte was making the arrangements; it was just a matter of logistics.
The family said it wasn't informed that Grekos' license had been restricted by the state in February 2011, prohibiting him from doing anything with bone marrow and stem cells. The restriction was due to an aspiration and stem cell treatment with a patient the year before who later died.
The state took action against Dr. Zannos Grekos because of the death of a 69-year-old breast cancer patient April 4, 2010, after undergoing the treatment at his Bonita Springs practice, at 9500 Bonita Beach Road, Suite 310.
Grekos couldn't be reached for comment for this story and other recent Daily News stories about him. Neither could his attorney, Richard Ozelie, in Boca Raton, who is representing Grekos at an administrative hearing over the license restriction. The state hearing has been delayed several times, most recently from later this month to June because of a change in Grekos' legal counsel, records show.
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The Bell family's anxiety grew as Jason's shortness of breath and fatigue worsened.
Primary pulmonary hypertension is a disorder in which the arteries that carry blood from the heart to the lungs become restricted, causing the pressure in the lungs to rise above normal levels. The prognosis is grim for children.
Jason never made the trip to Bonita Springs for the bone marrow aspiration or to the Dominican Republic for stem cell therapy. He died on Dec. 13, 2011, in Texas.
Now, the grief-stricken family is trying to get a refund. Bell acknowledges his contract with Regenocyte included a 10 percent cancellation fee, but Bell said he has only received $10,000 back so far.
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After Jason's funeral, Bell called the heart specialist, Dr. Michael Black, who he believed would have been doing his son's bone marrow aspiration. Black, a pediatric cardiac surgeon, was never part of Jason's treatment plan.
"I don't do bone marrow aspirations," said Black, reached by the Daily News in West Palm Beach. "I have no direct relationship with Dr. Grekos. I am strictly a heart surgeon."
He performed surgery on a child from Michigan who suffered from pulmonary hypertension who first had stem cell therapy with Grekos. Black said other patients of his also have seen Grekos.
Interview with Dr. Zannos Grekos
Grekos contests that his office has done ...
The idea is that the stem cell therapy will open the arteries in the lungs to lower the pressure so the patient can have surgery for the heart damage, he said.
"People are looking for a miracle," Black said. "The families are looking for a cure. There's some truth behind the science and whether we are there yet, I'm not sure."
The patient from Michigan was Cal Abbo, who was 9 years old when diagnosed with pulmonary hypertension more than three years ago, said Nahla Abbo, the boy's mother.
The first step was the stem cell therapy with Grekos in the Dominican Republic in March 2009, she said.
"He had the therapy and right away my son felt better," she said, adding that she was surprised. Back at school, her son could run between classes and the pressure in his lungs lowered.
That's when she found Black — at the time practicing in California. He was willing to do surgery on her son to close the hole in his heart. The heart surgery was done six months after the stem cell therapy.
She acknowledges that stem cell therapy was a leap of faith. She spoke to Bell family members when they were preparing for Jason to have the treatment."I can tell you I have gotten to know Dr. Grekos over the last two or three years," Abbo said. "I don't think Dr. Grekos is a bad person. I think he has a big heart, especially for children."
From one perspective, Grekos is willing to take a chance to help patients when nobody else in the medical profession will, she said.
But she understands that's no help to the Bell family right now.
Jimmy Bell said he struggles with his emotions.
"I have really struggled with some deep anger for this guy," he said. "I'm not looking to sue. I just want my money. I don't want to think about this. I just want to remember the good times with my son."