Source: The Moulton Advertiser

By Ginger Grantham Staff Writer

Area rallies to help child find cure in China

"You know, there was a time when I thought I would have to watch my child die," Sabrina Stover said. "There was one day when Jordan had 15 seizures. I really thought she would die then."

After years with no diagnosis for her daughter's condition, Sabrina at last sees a hopeful future. She and 12-year-old Jordan hope a stem-cell treatment in China will prove to be the answer. They are slated to leave for China on March 28 -- if they can raise enough money.

The Trinity family is getting a lot of support from their church, New Antioch Church of Christ, near Hillsboro, and, through the church family, Lawrence County residents.

People in Lawrence County are involved in fund-raising with donation jars in local businesses. It is a neighbor helping neighbor effort.

Michael Jones and his family met Jordan's family at church. His daughter, Kala, began helping Jordan for a service project for Phi Theta Kappa at Northwest Shoals Community College. They have put out the donation jugs in Moulton and East Lawrence.

"The treatment costs $25,900 for six injections of stem cells over a 30 day period. Between injections Jordan will have therapy," Sabrina said. "Plus we need money for air fare, a place to stay and food. It will all cost between $35,000 to $40,000."

Jordan is almost 13. She has a condition known as Glucose Transporter Type I Deficiency Syndrome or, for short, Glut I DS.

To say the syndrome is rare is an understatement. When Jor- dan was diagnosed, she was only the 123rd person to be identified with the condition by the Çolumbia University doctor to discovered it.

The syndrome is a genetic one where not enough glucose is transmitted to the brain through the spinal fluid. Jordan speaks only in single words and has difficulty walking. She has to use a walker.

"There is nothing wrong with her hearing and she remembers everything," Sabrina said.

Jordan has developed a sign language with her family that helps her communicate. She is very animated when she wants to get her point across.

The only good thing about the diagnosis is that Sabrina fi- nally knows what is wrong with her daughter.

"We took her everywhere trying to find out what was wrong with her," Sabrina said. "We even went to the Mayo Clinic in Rochester, New York. We got no answers."

One doctor told Sabrina to learn to live with it because Jordan would never be able to do anything.

It was happenstance that fi- nally led to diagnosis for Jordan.

"Just before Labor Day last year, my mother saw a story on NBC news about a family who had taken their daughter to China for stem cell treatment," Sabrina said. "I really didn't want to watch the story because I thought it wouldn't be it. But my mother convinced me."

Sabrina went to the Internet and watched the news broadcast. She was stunned to see Brooke Barels, the little girl in the news, with problems so similar to Jordan's.

Sabrina got on the telephone and located Brooke's mother, Vicki, who provided Sabrina with the telephone number of the doctor who diagnosed Brooke.

That doctor is Dr. Darrell DeVivo with Columbia University Medical Center in New York. After doing blood work on Jordan, he confirmed that she did indeed suffer from Glut I DS.

If her diet is not strictly controlled, she has seizures. It is a ketogenic diet that Children's Hospital in Birmingham helped design for Jordan once there was a diagnosis.

"We had her to Children's Hospital before and they suggested the diet but did not have a diagnosis," Sabrina said. "The only treatment in this country is diet, which is like the Atkins diet only more so. It makes the body burn fat for fuel and not carbohydrates. The stem cells used in China are from the umbilical cords of healthy babies, not from aborted fetuses."

Food is a real problem because Jordan is on a very restrictive diet. Sabrina plans to take a month's supply of food for Jordan with her.

Sabrina and husband, Richard, are praying the treatment in China will provide improvement in their daughter's quality of life.

"When Brooke went to China, she was wheelchair-bound," Sabrina said. "When she got home, she was able to take 26 steps unassisted. She walked using two four-pronged canes. Now she only uses one cane."

Sabrina is not looking for a miraculous cure. She just wants Jordan to have a more typical life. She wants Jordan to be able to go to a party and have friends.

While Jordan and Sabrina are in China, Richard and oldest daughter Taelor, who is 16 and a junior at West Morgan High School, will hold down the fort at home.

Glut I DS was first identified by Dr. DeVivo in 1991. He published a paper on it. Jordan was born in 1995 and not diagnosed until 2007. It troubles Sabrina that there was an answer for Jordan's problem all along but no one looked hard enough into the research to find it.

She wonders if an early diagnosis and the diet could have lessened the effect of the syndrome on Jordan.

Several fund-raisers have already been held and others are in the works.

There is a concert and silent auction on Feb. 2 at the Princess Theatre in Decatur. On Feb. 16, there is a bluegrass concert in Hartselle. There are donation jars located around Lawrence County.

If you miss the jars and can't make any of the events, you can send a tax-deductible donation to The Stover Family Fund, Wolverine Credit Union, 1616 Church Street S.E., Decatur, Al. 35601.