BOSTON -- Parents who have children with a rare seizure disorder are hopeful the government will approve a new treatment. It's the treatment of choice around the world.

But as NewsCenter 5's Heather Unruh reported Wednesday, it could be soon be available in the U.S.

Jacob Hernandez, 4, is a curious, energetic boy who is living with TSC. The letters stand for Tuberous Sclerosis Complex, a rare genetic disorder that can cause infantile spasms. Jacob started having seizures when he was 6-months-old.

"He was jerking forward. kind of like in a shaking motion," said Tatiana Ramos, Jacob's mother. "It was really scary."

"Any baby who develops this (infantile spasms) is at significant risk for not only mental retardation, but never walking and never talking," said Dr. Elizabeth Thiele, a neurologist with MassGeneral Hospital for Children.

But if infantile spasms are treated, Thiele said children can live a normal life. Jacob was put on the drug, Vigabatrin (Sabril), as a baby. His seizures stopped almost immediately.

"It is the treatment of choice for infantile spasm in other countries, other than the United States," said Thiele.

Thiele has prescribed Vigabatrin (Sabril) over the past 10 years to patients like Jacob, even though the drug is not FDA approved in the U.S. Many families have a hard time paying for it.

"And for most babies the cost is at least $100 to $200 per month," Thiele said.

But there is hope for parents who cannot afford the cost. Last month, an FDA advisory panel recommended approving the drug. Parents and doctors are optimistic.

"I'm so grateful for this medication. This medication worked wonders," Ramos said.

"Last week we had two babies on Vigabatrin (Sabril) and within two hours both babies stopped having seizures," Thiele said.

Thiele said the drug is effective at preventing seizures in many, but not all children. She said it does have side effects. The one most people are concerned about is vision problems. But Thiele believes the benefits of the drug outweigh the risks.