(Published Monday, January 22, 2007 11:37:01 AM CST)
A d v e r t i s e m e n t
By Mike Heine Gazette staff
EAST TROY-Look into her curious brown eyes, and you can tell Brooke Barels has something on her mind.
She just doesn't have the ability to say it.
Brooke can point to or grab an object. She also can mumble a word or two with a smile.
But the sentences aren't there.
When Brooke was still a fetus, a spontaneous genetic mutation caused her to develop an extremely rare condition known as Glucose Transporter Deficiency syndrome (GLUT-1). Now 9 years old, Brooke can't function like most children her age.
But there is hope. And Brooke's parents are about to go the extra mile-make that extra several thousand miles-to chase it.
Brooke Barels, 9, will travel to China for a series of stem-cell injectons.
Terry Mayer/Special to the Gazette
On March 2, Brooke, her mother, Vicki, and an aunt and cousin will travel to China. Once there, Brooke will receive six stem-cell injections that will hopefully minimize the effects of her disorder.
The treatment is new and unavailable in the United States. But the family will do anything to help Brooke, the 83rd person in the world diagnosed with the disease.
"(Vicki) and her husband's (Ed) pact to each other was 'Whatever it takes,' and they have done whatever they can," said Brooke's aunt Cindy Toman.
They need a label Signs of Brooke's condition weren't apparent until she was about a year old.
There were obvious physical delays. Brooke was unable to sit up on her own by her first birthday, and there was little to no speech effort by then. She also experienced minor seizures that included uncontrollable eye darting and vacant stares.
Brooke finally sat up on her own at 14 months. After her second birthday, a time when most toddlers are walking, Brooke began to crawl.
Ed Barels
Vicki Barels
By the time she was nearing 5, Brooke gained the ability to walk thanks to the aid of a walker. But to this day, she can't walk without holding onto something or someone, and her record for standing up without support is seven minutes.
Countless tests and attempts at therapies, such as use of a hyperbaric breathing chamber, brought some improvement in Brooke's motor skills, but progress was slow.
Initially, Vicki and Ed thought their daughter had a form of cerebral palsy (CP) because her symptoms were so similar. And even though Brooke's doctors at Children's Hospital of Wisconsin diagnosed her with CP, they always suspected it might be something else.
"So many of the tests did show up normal," Cindy said. "At one point, we were thankful. But you get to a point where you just want to put a label on it to get an avenue of action. To me, that was frustrating."
After networking with a doctor in New York, Brooke's doctors began testing the then-6-year-old for Glucose Transporter Deficiency in early 2004. Together, the medical team made a positive diagnosis in April.
"When they were testing for it, I said, 'I hope she has this,' which is strange to hope your child has a disease," Vicki said. "But there is treatment with the diet."
Beef sticks and butter After being diagnosed with GLUT-1, Brooke was placed on the Ketogenic Diet, a high-fat, moderate-protein and low-carbohydrate diet developed originally to treat epilepsy.
The diet works by forcing the body to burn fat for energy rather than glucose.
GLUT-1 prevents Brooke from processing glucose by blocking it from entering her spinal chord and getting to her brain. Glucose fuels the brain and tells the body what to do. Without it, Brooke is unable to function normally.
The diet limits Brooke's food intake to 1,200 calories per day. She needs three times the amount of fat in her food compared to the combined amount of protein and carbohydrates.
For every 10 grams of carbs and protein Brooke eats, she needs 30 grams of fat. That means salads with mayonnaise for dressing, beef sticks coated with butter, and a lot of ice cream.
Everything must be weighed on a gram scale.
"At first, I thought, 'There's no way we can do this,'" Vicki said. "I used to make a lot of meals all at once to try and save time when it was meal time."
But the family has adapted.
"We've grown accustomed to (Brooke's dietary needs)," Vicki said. "I guess we're used to it, where we know it's a part of our life. It helps her, so you sacrifice your time and effort."
"You don't think of 9-year-olds begging for broccoli, cauliflower or carrots-things typical children have to be force fed," Ed added. "But she's begging for them because it's not something she normally gets."
There's no cheating with the diet. Introducing foods that produce too much glucose can send Brooke's progress into immediate reverse.
"Some days, you just want to say, 'Have at it' and let her just have what she wants," Vicki said. "But the next day, she won't be able to sit up, so it's not worth it."
Positive signs Brooke's physical condition has improved greatly since birth, but the gains have been enormous since she started the diet, her family says.
Barb Larson, Brooke's weekly caretaker, said she's seen great improvement since she started working with the Barels family in 2000. In that time, she's seen Brooke progress from a toddler who was hardly able to crawl or stand to a girl who can walk by holding someone's hand.
"I think there's a lot more that she understands she needs to do," Larson said. "We'll sit down to do an art project with scissors and that. She'll reach for the scissors and try to do it on her own and can eventually start to do it."
Brooke's increase in cognitive abilities has helped her physical abilities grow tremendously, Vicki said.
"She's much more able to motor plan," Vicki said. "She can figure out how to get from one position to another and figure out how to make those types of things happen."
Brooke has also gained endurance, and her demeanor has improved greatly, Vicki said. She also understands she doesn't need to be one-on-one with another person all the time and can initiate play by herself.
"I never see signs of plateauing where I think, 'Well, maybe this is it,'" Vicki said.
Tickets to China The Barels know that despite all her gains, there is a world of opportunity out there that Brooke has only touched. Through her upcoming stem cell treatment, the family hopes Brooke can experience much more of life.
Brooke will receive six injections of 10 million stem cells over a four-week period at Xiaoshan Hospital in Hangzhou, China.
The treatment uses stem cells from the umbilical chords of healthy Chinese babies rather than the more controversial embryonic stem cells that some say destroy a potential human life.
The treatment is not available in the United States, and it is not yet approved for Brooke's condition, Vicki said.
American doctors "want it to be safe, but yet it takes so long (for government approval)," she said. "But for the types of cells she's going to be getting in China-the testing, trials … they're all done. There are hundreds of patients who have been successful already."
The cells that will be injected into Brooke have the predisposition to become white brain matter cells that will likely help her gain more motor skills and physical and cognitive abilities. The injections have been used to treat other brain diseases, Vicki said.
"We're hoping the cells make up that wiring where the brain tells her body what to do," Vicki said.
Granted, there are risks with the procedures, but the odds look good, Vicki said. And it's worth it to Ed and Vicki, who want to try everything possible to help their daughter.
"Our mission statement has always been that we never want to look back and say we wish we would have done this or wish we would have done that," Ed said. "We will try to do everything that we can that's feasible."
"You go to the ends of the earth for your children, and that's what we're doing," Vicki said. "It is definitely going to be a new experience."
Benefit planned
A benefit to help raise money for Brooke Barels' trip to China and medical treatments is planned from 3 p.m. to midnight Saturday, Feb. 24, at the Veteran's Memorial Building, 588 Milwaukee Ave., in Burlington.
With travel, the family expects the trip to China for six stem cell injections to cost more than $30,000.
The fund-raiser will feature performances by Twin Rivers Band, Velvet Jones, Mathew Haeffel Band and Giant Steps.
Assistance in the form of food, beverages or silent auction offerings is appreciated. Attendees may also buy raffle tickets, make voluntary cash donations in advance or pay $10 at the door.
Advance donations can be made to "The Benefit for Brooke Barels" at Fox River State Bank, 241 E. Jefferson St., Burlington, WI 53105.
