Marketing materials by Viacord and Cord Blood Registry, the two largest companies, do not mention that cord blood stem cells cannot be used by the child for genetic diseases, although the fine print does state that cord blood may not be effective for all of the listed conditions.
"It was the life preserver that didn't float," said Dones.
Some brochures advertising private cord blood banking show children with cerebral palsy, a neurological disorder, who were treated with their own stem cells. In the case of Cord Blood Registry, the company lists all stem cell transplants conducted at Duke University. In a list of individuals treated in their "stem cell therapy data" cerebral palsy is listed. However, transplants were part of an early research study and studies of efficacy are just now underway.
"We don't have any data yet about whether it works or not. Sometimes they improve on their own," Kurtzberg told ABC News.
Tom Moore, CEO of Cord Blood Registry, the largest private cord blood banking firm, told ABC News conceded that there was no proof that the transplants worked, but added that there is strong anecdotal evidence.
"I think proof is a strong word right now," said Moore. "I think there are a number of situations but they are anecdotal."
Anthony's doctors found a match for him through the New York Blood Center's National Cord Blood Program, a public cord blood bank. Unlike private banks, public banks do not charge to collect cord blood, they charge a patients insurance company when cells are used. And once it is entered in the public system, the blood is available to anyone who needs it.
Although blind, today Anthony is a healthy 7-year-old after being treated with donated cord blood stem cells. Dones said she now believes private banking was a waste of her money.
"There are so many people out there who don't really understand and they are so misled by the advertisements out there it still makes me angry," said Dones.