A 30-hour flight to the other side of the world is the least of what the Schmanskis will do for their daughter.
Especially if it will bring her back.
On Wednesday, Tim and Maria Schmanski will travel with their 16-year-old daughter, Tori, to Hangzhou, China, where she will receive stem cell treatment over a 32-day period at a Beike Biotechnology clinic.
"We're just trying to get more of the old Tori back," Tim Schmanski said.
One day can change everything
On June 19, 2005 Father's Day Tori was in a car with her younger sister and two cousins when the car rolled two times and landed upside down in a canal. Despite the water filling the interior, Tori was able to push her sister and cousin out of the submerged car but was not able to get herself out and remained trapped underwater for 15 minutes until rescuers arrived.
Tori had to be resuscitated twice on her way to the hospital. Her brain went without oxygen for an estimated 25 minutes, Tim Schmanski said.
Tori survived, and life has never been the same for the Schmanski family. Tori has brain damage an anoxic brain injury, to be exact leaving her unable to speak, eat or move her limbs. Her parents spent nine months with her in the hospital as she battled pneumonia, digestive problems, seizures and vomiting, switching nights sleeping in a chair at her side.
Neighbors, friends and family rallied to support the Schmanskis. Tori was a member of The Dance Club, an Orem-based dance company. It has dedicated competitions and donated proceeds of dance concerts to the Tori Schmanski fund. Many other donations to the fund through Tori's Web site (www.pray4tori.com) have been used to supplement health insurance for Tori's medical care. The Lindon-based company For Every Body has recently reintroduced its "Pray 4 Tori" candle to help fund the trip to China."If it wasn't for all the generous people who donated to the Tori Schmanski fund, I don't think this would have happened," Tim Schmanski said.
A different life
After the grief, the hospital and the change, the Schmanskis adjusted to life with a different Tori.
In March 2006, the Schmanski family was able to bring Tori home. Maria Schmanski quit her job as a travel consultant to become a full-time caregiver for Tori. Her days revolve around her daughter's needs. She said it takes 2 1/2 hours to get Tori ready for each day, from giving her medication to a head-to-toe sponge bath. She said she doesn't like to go further than 10 minutes away or leave Tori with someone else.
"She's unpredictable," Maria Schmanski said. "I don't want to put someone in that position. She has seizures, anxiety attacks, sudden pains, vomiting."
Life definitely has been different, Maria Schmanski said.
"It's stressful," she said. "Tori can have a lot of anxiety, and it can rub off on you. She can get upset because she can't tell you what she needs."
Tori's days are spent watching. Watching her younger brother and sister play games from her wheelchair, watching the Utah Jazz with her dad and grandpa, watching TV from her bed, watching movies with her brother, watching family photos change on a laptop screen saver.
Sandy Schmanski, Tori's grandma, also helps out, reading picture books and gossip magazines, updating Tori on celebrities such as Nicole Richie and Justin Timberlake. She has a card game she plays with Tori, too: She holds up two cards. Tori looks at both, then focuses her gaze on the correct answer to Grandma's question. In one instance, Sandy Schmanski holds up two cards, one with "Orem" written on it, the other with "Salt Lake City"
"Where do you live, Tori?" Sandy Schmanski asks. Tori knows. She lives in Orem.
"How do you say 'hello' in French, Tori?" she asks. Bon jour. Tori knows.
"I think if she could effectively communicate, she would shock us," Tim Schmanski said. "We are drawing more and more out of her. She's kind of trapped in her body as we see it."
The Schmanskis take Tori to physical, speech and occupational therapies every week. They've researched and tried all sorts of therapies, treatments and medicines to help Tori, including hyperbaric oxygen treatment, where she was put into a chamber and pressurized oxygen was forced into her body. It loosened her muscle tone.
"That alone is big," Tim Schmanski said.But it isn't enough, which is why they're going to try to get the old Tori back.
The 'old Tori'
The Schmanskis describe the old Tori as beautiful, charismatic and full of life. She was a snowboarder and an avid dancer, talented in jazz, hip hop and ballet. She loved the color orange and eating pizza and spaghetti. She was a "nonstop texter" and she started building Web pages on the Internet when she was just 8 years old. She was smart; as a sophomore in high school, she was taking four college-level classes. She wanted to be a doctor, wanted to attend Stanford University.
Younger sister Whitney, 12, and Tori have a lot in common. Whitney, like Tori, is also a talented dancer and member of The Dance Club. She said they both love shopping and iPods. She remembers dancing together and a dance trip to MGM Studios at Disney World. But things are different now, even though Tori still wears orange shirts and orange socks with monkeys on them and still likes the same music and movies as before. Whitney said it's different because they can't talk to each other.
Though they still love her, they all miss the old Tori. Including Tori.
"You can tell when she's sad," Maria Schmanski said. "If she sees something she really misses" she "voices out, (a) kind of moan."
For example, a while back, Maria Schmanski said Tori , while watching the "So You Think You Can Dance" TV show, saw a dance friend and made a whole lot of noise.
Now, the Schmanskis have different dreams for Tori than being a doctor and a dancer, and stem cell treatment is a way they hope will realize those dreams."We're willing to try most everything, as long as it's not too dangerous," Tim Schmanski said.
A journey to China
What the Schmanski trip to China may bring is well worth the trip, they say. Tori and her parents will fly to Washington, D.C., then Paris, then Shanghai, China, afterward driving to Hangzhou, where a Beike Biotechnology clinic and research facility is located. Throughout their 32-day stay, doctors will inject Tori's spine with 10 million stem cells every five or six days 50 million in all that will hopefully become new brain cells.
Stem cells can be used to replenish many different cell types within the body, according to the National Institutes of Mental Health Web site. The Schmanskis hope the stem cells, when combined with the brain's natural tendency to repair itself, will help Tori recover.
Tim Schmanski said they found out about stem cell treatment and the clinic through online research, specifically through the Web site www.stemcellchina.com. In early 2006, they began talking to other families whose family members have had the same procedure and have seen some positive results the kind the Schmanskis hope to see in Tori: more awareness, better control of her body, more effective communication and improvements in eating and swaddling.
"There's even people who have been paralyzed for 20 years that are moving and feeling their feet," Tim Schmanski said. "There's no guarantee, but the vast majority have seen results."
Tori will receive adult stem cells taken from an umbilical cord instead of embryonic stem cells, which come from destroyed embryos. It is a treatment that is not currently available in the United States.
Embryonic stem cell research is a hot issue in politics. However, Tim Schmanski said they did not make a decision based on moral reasons but chose the adult stem cells because not enough research has been done on embryonic stem cells, which may cause tumors and other problems. He said there are "too many unknowns" with embryonic stem cells, and he thinks more research is needed on the subject.
"I think that in this country we need to federally fund both embryonic and adult stem cell research," Tim Schmanski said. "We don't have enough data on embryonic stem cells to really know what they can do."
He said that if the treatment works, they won't be against doing it again.
"Our hope is that the next time we do this, we won't have to go to China," he said.
Tim Schmanski is hopeful about the effects the treatment may have on Tori.
"I'd like to see her walk again," he said. "I'd like to see her have a better quality of life."
Maria Schmanski has different expectations.
"I hope it helps," she said. "I don't expect a miracle. Even just something little, like eating better or communicating more."Just a little bit more of the old Tori back.
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