Though unable to sit up without the assistance of her parents, Aubriana, attached to a permanent tracheal tube and ventilator, smiled for visitors Tuesday as her parents prepared for a very public party — anyone can come, they say, and they can accommodate up to 200.

“We invited family and friends, to spread awareness,” said Aubriana’s mother, Shellie Lopes.

Her parents believe there will be more birthdays, despite the grim statistics.

“When she was first in the hospital, they said it was a death sentence,” Lopes said. “I don’t like to say that. I don’t believe it.”

And Lopes, 25, along with Aubriana’s father, Eric Navarro, 27, say they have new reason for hope.

UC Irvine stem cell researcher Hans Keirstead is developing a treatment for babies that suffer from the disease that relies on human embryonic stem cells.

Keirstead, who developed another treatment for acute spinal injuries that will become the world’s first clinical trial using stem cells, wants his new treatment to  become the world’s second.

The proposed trial must first win approval from the Food and Drug Administration; only then will candidates be chosen, and no one yet knows who will participate.

But Navarro and Lopes say they would leap at the chance to have their daughter treated with the new method, despite the controversy surrounding the use of human embryonic stem cells. Many object because the cells are derived from human embryos, even though those early-stage embryos are destined to be discarded by fertility clinics.

Read full article.

By Amanda Stratford, “Titusville girl receives help in China”, October 4, 2009, © Florida Today

“Janesville teen undergoes experimental stem cell treatment”, September 3, 2009, © WorldNow and WKOW TV

By Amanda Stratford, “Titusville girl prepares for trip to China for stem cell therapy”, August 27, 2009, © Florida Today

You don’t have to ask 16-year-old Kyle Knopes twice if the hospital stay halfway around the world was worth it.

“Definitely” and “absolutely,” Kyle and his mom, Penny, said.

Kyle shows how he’s now able to open his fist and stretch each finger—something he couldn’t do before without help.

Kyle and his family returned earlier this month from China where he received eight stem cell injections they say have improved his quality of life living with Type 2 spinal muscular atrophy.

He noticed the most improvements after his first injection.

“I rolled from my back to my right side, which I haven’t done since I was 6,” he said.

In therapy later that day, he rolled from his back to his left side, too.

Other improvements include more strength in his arms, hands, wrists, head, neck and jaw. More advances can show up for up to nine months, he said.

The added strength, for example, allowed Kyle to carry a bottle of apple juice instead of just the empty cups. It’s also easier to eat, write and do other daily activities.

Kyle is diagnosed with the genetic neuromuscular disorder that affects the part of his nervous system that controls voluntary muscle movement. He has never walked or crawled and has been in a wheelchair since he was 18 months old.

Accompanying Kyle on the 5½-week journey to Qingdao Cheng Yang Peoples Hospital in Qingdao, China, were his mother and brother Andrew.

Typical days for Kyle included two sessions of physical therapy, acupuncture—17 needles at a time—and electric wave therapy.

He received the stem cells through an IV, sitting with the group of other international patients.

The stem cells harvested from umbilical cord blood arrived three times a week, and the Knopes saw the delivery one day—on an armored truck guarded by three guys with machine guns, they said.

Kyle and Penny said they’re happy to have gone through all the fundraising and planning for the treatment that cost more than $30,000, plus expenses.

They’d even consider a second trip in a few years for more injections.

They met families from across the United States, Australia, United Arab Emirates, England and elsewhere during their stay.

“It was like one big family,” Kyle said.

HOW IT WORKS

Stem cells can become any cell in your body, Kyle Knopes explains. He knows because he’s had eight injections of them through an IV.

When people hear about stem cells, they may think of the controversial embryonic stem cells. But the stem cells he received are from umbilical cord blood.

When the stem cells are injected into a body, the body tells them what it’s missing. People seek the type of treatment Kyle received for many reasons. Blindness was common among the patients at the Chinese hospital, he said, as well as a condition where a person is missing the optic nerve.

The stem cells can detect those problems, go straight to the problem site and program themselves to fix it. For patients missing the optic nerve, for example, the stem cells go to the eye and form the optic nerve, Kyle said.

The treatments are not available in the United States because the scientific community hasn’t validated the procedures, a prerequisite for federal government approval, said Terry Devitt, director of Research Communications at UW-Madison.

“The (treatment’s) safety and efficacy has yet to be confirmed by the biomedical community,” he said.

East Troy girl improving

The progress of an East Troy girl after stem cell treatments in China pushed her family to make a second trip this spring.

Brooke Barels, 12, of East Troy received four injections of stem cells harvested from umbilical cord blood during a three-week stay at Xiaoshan Hospital in Hangzhou, China. She first received six injections during a trip in 2007, said her mother, Vicki.

“It really sped up her progress,” Vicki said of the first treatments. “Although it’s (progress) normally very slow for Brooke, it kind of gave her a little jump in the physical area.”

Brooke has glucose transporter deficiency (GLUT-1), a spontaneous gene mutation that leaves her with cerebral palsy-like symptoms and delayed brain development.

After her first treatment, she was able to walk with canes instead of a walker, her motor skills increased and she made cognitive improvements. Since this spring’s treatment, she’s been more consistent with her abilities, though she hasn’t shown any brand new skills, Vicki said.

“She’s definitely more consistent with her abilities, and she’s doing things that are challenging more consistently,” she said.

Vicki said the second trip was worth it, but she’s hopeful Brooke will make more improvements in the coming months. It’s been about 2½ months since the treatments, and they were told they’d see the most improvements between two and six months.

More information on stem cell treatments and therapies around the world can be found here.

By Gina Duwe