Brain Damaged Teen Heads to China for Stem Cells

By Jeremy Duda, Daily Herald, January 3, 2007

Tori is about to begin a journey that could transform her entire life, whether she is aware of it or not.

Tori was left with brain damage in June of 2005 at the age of 15, due to a car accident and near drowning. The capacity to speak, the normal use of the bathroom, and the power to eat on her own was robbed from her thanks to the anoxic brain injury she sustained. Her parents now feed her through ha tube in her stomach and Tori is restricted to a wheelchair when she leaves her bed.

Ranging from hyperbaric oxygen treatment to physical therapy, Tori’s parents Tim and Maria, and tried a wide range of treatments for the past year and a half. Tori will now fly to China on January 10th, to under go stem cell treatment over the course of 32 days. Online research led to the family’s discovery of the treatment option overseas.

There are limits to what the treatment can accomplish and the family is privy to this knowledge. Tim says that although it is a great wish, Tori will probably never be able to walk again; but the hope is that she will at least have the ability to swallow, move her limbs, and speak, restored by the treatment.

"We'd like to just have more of her back," said Tim.

What effect does Maria want from the treatment?

"A smile," she said.

Stem cells are regenerative cells that can develop into other types of cells according to the National Institutes of Health. The regeneration of tissue that does not do so naturally, such as heart tissue and neural cells, could be facilitated with stem cell treatment. According to the NIH website, leukemia, diabetes, and other diseases can potentially be treated as well.

Fanning the flames of controversy are embryonic stem cells which are one of the two types of stem cells available for potential treatment use. Less controversial and boasting a much greater success rate thus far, adult stem cells (hematopoietic) are found in umbilical cord blood and bone marrow. Unlike embryonic cells, they do not involve the destruction of an embryo.

Stem cell funding is not widely available in the United States, so Tori and her parents have to fly thousands of miles to seek treatment in China since there is no accessible help in America.

Over the course of 32 days, doctors will inject 50 million stem cells into Tori’s body. Doses will be administered close to the brain stem in her upper spine; each individual injection will consist of 10 million stem cells, with 4 to 5 days between each dose. The doctors have already programmed, or differentiated, the stem cells to develop into brain cells once they enter Tori’s body and begin to go to work.

Interestingly, the reason was not ethical, but medical that the family chose to use adult stem cells as opposed to embryonic cells. This was because the risk associated with embryonic stem cell use is far greater than with adult cells. Tumors can easily form, and Tim feels that more research is needed before they can be deemed a safe and reliable option for treatment.

Tori’s abilities are limited right now. She cannot tell her parents what she wants, but can make noise if there is something that is needed. A feeding tube is essential even though she can swallow tiny amounts of food. To prevent seizures, her parents give her medication every day.

"She's 100 percent dependent on us," Tim said.

Tori’s struggle is evident, but signs of hope do present themselves. Tori can recognize friends and family according to Tim and Maria. Holding up flash cards with different answers on them, her parents ask her questions. If a card appears that Tori thinks has the correct answer to the question, she can nod yes. Maria says that from her three years of French, Tori is still able to recognize words.

Tim and Maria study with Tori using an "I spy" book, telling Tori what objects they spy and letting her look and nod at the correct item.

"She's still a typical teenager and if she doesn't want to participate sometimes she'll just close her eyes and turn her head," Tim said. Tori is now 16 years old.

Others who have had stem cell treatment have been contacted by Tori’s parents. A Florida teenager with brain damage that was suffered during a near drowning is on schedule for a similar treatment at the same clinic as Tori. The family is awaiting word from the boy’s parents to see what progress he has made.

"They're saying he's more alert. He has more body movement," said Tori's grandmother, Sandy.

The thousands of dollars for their flights, food, hotel; and the $20,000 for the treatment is not covered by their insurance. However, they did manage to raise $50,000 through various charity events and a website, www.pray4tori.com. Business class plane tickets (because Tori cannot bend her legs) were donated, so the final cost was brought down to about $35,000.

Tim says he would consider doing an additional treatment if the first shows good results. But he also hopes that if there is a next time, it will be closer to home in the States. The family is hopeful that a Democrat controlled congress will be able to direct more federal funding towards stem cell research.

"If we could spend some federal money, get some research on that front, I think it'll be more revolutionary than antibiotics in the 1900s or organ transplants," Tim said. "It is the next revolution in medical treatment."