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'Good ice, mom': Stem cells made that sentence happen

Mike Heine/The Week

(Published April. 9, 2007, 11:38 a.m.)

Miracles can happen.

Brooke Barels is proof, her mother says.

Brooke lives with Glucose Transporter Deficiency (GLUT-1), a spontaneous gene mutation that leaves her with cerebral palsy-like symptoms and delayed brain development. The was the 83rd person in the world diagnosed with the condition.

Speech is difficult and limited to strings of up to three words. Walking on her own is not possible, yet. Standing without holding onto something is a challenge.

But not long after a third injection of stem cells, on the 20th floor of a hospital in Hangzhou, China, something happened.

Brooke, without provocation, began saying words she's heard thousands of times, yet never uttered herself.

Her mom, Vicki, and aunt Cindy Toman, who took 9-year-old Brooke from rural East Troy to China all last month, were in disbelief.

"Cindy and I looked at each other and it's like, 'Oh my God! Did you just hear that?'" Vicki said Thursday, a few days after flying back to the states. "I knew it wasn't in my head. Cindy was there with me.

"Brooke's sounds were more clear and her words are more crisp."

From cells to sentences

Brooke received a total of six stem cell injections in China. It was a procedure unavailable stateside. Her body received about 60 million stem cells, each developed from the umbilical chord blood of healthy, newborn Chinese babies.

The Barels family hopes Brooke will see improvement with her motor skills, cognitive processes and physical abilities.

Doctors said most of the improvements would come in two to six months.

Brooke has decided not to wait.

Another small miracle happened Thursday when this reporter was at the Barels' residence for interviews.

Brooke looked out her bedroom window and said "ball" and "dog," pronouncing the end sounds of both words. Previously, she would have only said "ba" and "da."

"That was so big," said an excited Beth Small, Brooke's twice a week in-home healthcare aid. "She never would have said that before. She's more alert. She pointed to the ball and said, 'ball.'

"She never would have done that before. You just see it in here eyes that there's more going on in there. It's so exciting."

It was one of a handful of miracles that have come so far.

Vicki and Cindy witnessed Brooke's first big breakthrough. Brooke, a big fan of ice cream, "All of a sudden started saying, 'good ice, mom,' Spontaneously," Vicki said.

"We didn't have to try to get her to say, 'good ice.' Or have to model or cue her or have to repeat it over and over. She was just out with it. 'Good ice, mom.' That's a big improvement for her."

 

Doubts

Vicki and her husband, Ed, said they would travel to the ends of the earth for their daughter. This month-long trip to China was them living by their word.

But Vicki and Cindy almost doubted the decision soon after they first arrived.

The hospital is in a more "second world" part of China, not nearly as modern as Bejing or Hong Kong, Vicki said.

Sure, the highly specialized 20th floor of the Xiaoxhan Hospital was clean and modern.

The operating room floor where Brooke had to go for her first spinal tap cell injection wasn't. People were smoking in the lounge, walls were marked from who knows what and a man was being wheeled into a surgery room still wearing his street clothes.

A stem cell specialist, Dr. Mike Jun Shi, the hospital's Stem Cell Treatment and Rehabilitation Center director, assured Vicki and Cindy things would be OK.

"That very first time my sister and I just cried," Vicki said. "At that point, I was scared. I was just thinking, 'I hope I made the right decision.' I thought I had researched everything. I was very well educated on it, enough to feel I was comfortable with what we were doing. Then all of a sudden I was doubting myself.

"I just had to remind myself that this doctor is in charge and he knows this and it's his specialty. It turned out to be fine and he was very reassuring afterward."

Dr. Mike, as Vicki calls him, answered all her questions, had a comfortable bedside manner and was great with all the kids on the 20th floor.

"He was very reassuring that everything was going to be OK, and I relied on him to make everything OK. I feel that he did," said Vicki, noting that she will go back to Dr. Jun Shi if the family feels Brook could benefit from more stem cell injections.

 

What's next?

Vicki knows the improvements will come slowly, but that's all they want to do-improve Brooke's life.

The family believes the stem cell injections are safe and Brooke will never regress. The injections have shown improvements in hundreds of cerebral palsy patients and few have shown any ill effects, Vicki said.

"I'm trying to be realistic about it," Vicki said. "I'd love for independent walking, but I'm hoping for improvement in areas where she's more lacking. But we'd welcome any positive change."

Brooke is very active and can walk with a walker and climb stairs with help. She even stood and touched her toes three times in a row, also a new miracle.

It's cognitive development where the Barels are hoping for the most improvement.

Hopefully, "it makes it possible to learn at a quicker pace," Vicki said. "She has the ability to learn, but it's such a slow progression of development. It'd be great for her to be able to speed up that process, the thinking process, the memory."

The stem cells will not cure the GLUT-1 genetic mutation. But it appears already that the stem cells have helped.

Vicki hopes other families, and American doctors, will see the progress her daughter has made-and will make-and push for approving more stem cell therapies in the United States.

"Now that we've been to China, and I see the possibilities, and I've seen the patients that are feeling better and doing better, and heard the stories about patients who have come and gone from China and are just improving every day, I'm in more of a position now to say I would be more of an advocate," Vicki said. "If Brooke is living proof that this could help kids and disorders, I would want to do nothing but spread the word of awareness and play a role in making it possible for more kids."

 

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