Boca Raton couple say stem cell treatments help son.

Boca Raton couple say stem cell treatments help son.

By Jennifer Shapiro
Special Correspondent
Posted May 27 2005

Like most fathers, Gary Susser has big dreams for his son, Adam.

"I expect him to play the piano, recite the Gettysburg Address, and for him to walk down the hall when I come home from work," said Susser, of Boca Raton. "There's no reason not to expect the best for him."




Each day, the Boynton Beach consumer and elder rights attorney, and his wife, Judy, are trying to get closer to that dream.

Their 4-year-old son has cerebral palsy and is quadriplegic. He suffers from brain damage, and until recently was blind and couldn't speak because of complications when he was born.

Adam is something of a celebrity. He inspired Florida's medical malpractice law. People magazine featured him in an article about medical mistakes, and the family has appeared on TV shows with Oprah Winfrey, Montel Williams and John Walsh.

Now, Adam is part of a study, along with seven other children who have cerebral palsy, through the Steenblock Research Institute, in San Clemente, Calif. The institute doesn't perform stem cell treatments but provides support and data analysis to clinics abroad that do.

Adam's parents say he has shown great improvement since he received two umbilical cord stem cell treatments in February and November.

"After the second treatment, he started talking, making more sounds, being more verbal," said Judy Susser, who said he also has more strength, mobility and flexibility.

A little less than three months after receiving his first stem cell treatment, doctors told the Sussers that Adam probably would never see. But about three weeks later, they watched as Adam followed a ball across the floor with his eyes that his twin brother, Brandon, had rolled to him.

Doctors confirmed that Adam could see.

"When we had the results we had with Adam, it was worth everything. I think stem cells are the way of the future for our son," Judy Susser said.

The Sussers heard about the Steenblock study through Floridians for Patient Protection, an advocacy group for medical malpractice victims.

Dr. Anthony Payne, who works at Steenblock, referred the Sussers to a doctor in Mexico. After months of research and talking to people whose children received the treatments, the Sussers embarked on their first journey to Tijuana, Mexico.

Treatments consist of injections of about 2 million umbilical cord stem cells each, Payne said. Each treatment costs $6,000, Gary Susser said.

"In the over two years, we have been following patients treated abroad with umbilical cord stem cells, we have not seen any bad reactions nor any secondary illness," Payne said. "All of the children significantly improved. The younger they are, the better they respond."

Umbilical cord stem cell treatments are not approved in the United States for neurological disorders such as Adam's, Payne said.

"Forget the religious debate and the ethical concerns, it's going to be about 10 years before they make embryonic stem cells safe. They should be looking closer at other stem cells, like umbilical cord stem cells," Payne said.

The Sussers still need live-in help for Adam, who receives aqua, vision, speech and hippo, or horseback riding, therapy once a week and gets physical therapy twice a week. He also gets therapy at the Davis/Schmidt Potentials School on the Florida Atlantic University campus in Boca Raton. Adam was premature, delivered about 33 weeks into pregnancy. About four days after arriving at Coral Springs Medical Center, Judy Susser gave birth to twins. Adam was severely asphyxiated, which caused brain damage, his father said.

The Sussers filed a lawsuit against the hospital in 2002 and were awarded an undisclosed amount. "We were told that we should consider putting Adam in a home and raise Brandon alone," Gary Susser said.

The Sussers continue to fight for Adam and are taking him back to Mexico for his third treatment June 6. They say they hope to continue the stem cell treatments every three months.

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