Trinity girl to receive treatment in China for medical disorder

Daily photo by Brennen Smith
Jordan Stover, right, and her sister, Taelor.
By Ronnie Thomas
TRINITY — Jordan Stover sat beside her older sister, Taelor, in their Trinity home and opened Christmas gifts.
As she ripped the wrapping, their mother asked if she had gotten new shoes. Jordan jabbed a forefinger into the air.
“She’s saying, ‘Just a minute, I’ll let you know,’ ” Sabrina Stover said.
Jordan apparently hears and understands.
“Tell her to clean up her room,” said Stover. “She shuts down like a typical 12-year-old.”
But her vocabulary is limited to single words. For most of her life, the family searched for a diagnosis. They got it less than a month ago from a doctor at Columbia University Medical Center in New York. He identified glucose transporter type 1 deficiency syndrome in 1991. The genetic disorder doesn’t allow enough glucose to reach the brain through the spinal fluid.
Mother and child flew Wednesday to New York, where Jordan, a fourth-grader at West Morgan Elementary School, will be a part of Dr. Darrell De Vivo’s study group. They return Sunday.
From Children’s Hospital in Birmingham to the Mayo Clinic in Rochester, Minn., Stover sought to unlock the mystery. It finally came because her mother, Irene Woodall of Decatur, watched the news one evening shortly before Labor Day.
The story was about a Wisconsin woman, Vicki Barels, and her daughter, Brooke, then 9, their association with De Vivo and their subsequent trip to Hangzhou, China, where Brooke had stem cell treatments.
30-day treatment
Stover and Jordan plan to leave for the southeast China city April 1. Jordan will undergo similar treatments over 30 days.
Stover recalled the agonizing search for help. She said her daughter had her first seizure at 6 months of age and when Jordan was 18 months old, a doctor said, “Mom, go home and learn to live with it. This child will never do anything.”
Stover said she went to the Internet to find the television segment her mother had told her about. Within 20 minutes of seeing it, she had Barels on the phone.
“She told me it sounded as if Jordan had the same problem. She gave me De Vivo’s number,” Stover said.
“We couldn’t get Jordan’s blood work until Nov. 12 and sent it overnight. We got the diagnosis Nov. 20.”
Umbilical cords
During the interim, Stover made arrangements for China, which is separate from De Vivo’s work. She said the stem cells Chinese doctors use are not embryonic but are from umbilical cords of healthy babies.
Richard Stover said his daughter, who uses a walker, will undergo treatments and therapy six hours a day, six days a week.
$25,900 for treatment
He said doctors will give Jordan six different injections, intravenously or through spinal taps, at a cost of $25,900. He said insurance “pays zero.”
Sabrina Stover said dieting is the only treatment available in the United States for the syndrome. She will take a month’s supply of food for Jordan.
“She gets 2,500 calories a day, the majority coming from fat, butter and heavy whipping cream,” Stover said. “We tried the diet earlier for two years. Jordan was getting only 1,200 calories a day and was hungry all the time. Nutritionists know more now and have fine-tuned it.”
Stover said the syndrome is so rare that Jordan is only the 123rd case De Vivo has diagnosed.
“But my message is, don’t stop looking for assistance,” she said.
Taelor, 16, a junior at West Morgan High, said she and Jordan are close but they have their moments.
“We argue,” she said. “Who wins? Jordan does. She plays up to our parents.”