December 4, 2016

“Slowly everything started to work”

Featured photo by Emily Reynolds

Webster University alumna Ava Roesslein is able to move in ways that she never has before. She has battled cerebral palsy (CP) her entire life. As a result of premature birth, Roesslein has limited mobility and uses a motorized scooter to get around, but does plenty of walking as well. During the summer of 2012, while studying abroad at Regent’s American College in London, Roesslein received news that she would be eligible to receive stem cell treatment at the Stem Cell Institute in Panama City.

“I was basically doing a dance party in my London dorm room in the middle of the night,” Roesslein said.

Roesslein received the stem cell treatment last month, which is illegal in the U.S. She was injected with 15 million umbilical cord stem cells a day for four days, and she said she felt the effects almost immediately. After the first day of being injected, her mother and two aunts who traveled to Panama with her said she had a more healthy color to her skin. She also got three inches taller as a result of her posture straightening out. In addition, her movement, strength and balance abilities have improved.

“It was a jaw dropping experience. Slowly everything started to work,” Roesslein said.

The process

Going through with stem cell treatment wasn’t a quick process, and it wasn’t easy for her either. The opportunity arose three years ago when her father John Roesslein, an American Airlines ticket agent, struck up a conversation with a man who had muscular sclerosis (MS) and was traveling to Panama for stem cell treatment.

“I saw this guy and I struck up a conversation with him. He said he was going there for his last round of stem cell treatments. He couldn’t walk and now was playing golf,” John Roesslein said. “So I told Ava about it, she emailed him and it started the whole process.”

Staff physician Cindy Leu (left),  Ava Roesslein (middle) and nurse Tamara Mootoo (right) at the Stem Cell Institute in Panama City. / photo contribtued by Ava Roesslein

Staff physician Cindy Leu (left), Ava Roesslein (middle) and nurse Tamara Mootoo (right) at the Stem Cell Institute in Panama City. / photo contribtued by Ava Roesslein

He and Frankie Roesslein, his wife and Ava Roesslein’s mother, had some reservations about her pursuing stem cell treatment, but ultimately supported it. But it didn’t stop her from also being a little nervous.

“At first I was a little skeptical, he had MS so bad he was bedridden and had to crawl to the bathroom,” Ava Roesslein said. “He went and had this treatment done in Panama and it was like a transformation, he came back and could walk, play golf, go to the grocery store.”

After looking into the clinic herself, she chose to pursue the treatment in Panama. Because her treatment is not approved by the U.S. Food and Drug Administration (FDA), Roesslein had to send all of her medical records to the clinic, which would’ve cost her $2000 if one of her doctors hadn’t helped out. In addition, the long wait time and having to raise money to receive the treatment were big hurdles to overcome. But her first fundraiser alone raised over $10,000 and she met her goal of $25,000 with time to spare.

However, in the few months before leaving for Panama, she was second-guessing herself about the treatment. She was worried about the possibility of side effects and the idea that she was traveling to another country for it.

She said her doctor for the treatment used to work in Costa Rica, and was run out of the country because his procedure was not regulated there. She said in Panama, the clinic’s work is completely legal.

She also received mixed reactions from her doctors about her decision to undergo stem cell treatment. One of her doctors called her crazy for wanting to go.

The risks and legality

Webster Management Professor Jim Brasfield specializes in health policy and said stem cell treatment is a controversial subject in the U.S. for both political and scientific reasons. He said discussion about the potential use of stem cells as medicine started in the 1990s, and was thought of as a “silver bullet” that would solve all kinds of problems.

“But as I understand it, the scientific breakthroughs that were expected have not come,” Brasfield said.

Brasfield said stem cell treatment and research has been politically controversial because of the pro-life movement and the FDA. He said many of the stem cells used for research and treatment are from embryos that were obtained as a result of an abortion, and if stem cells are drawn from the patient’s body then re-introduced, the FDA can question if it is a drug. This makes stem cell treatment subject to FDA regulation.

The result

At physical therapy, Ava Roesslein now is able to accomplish a much greater amount of physical challenges than she could before.
“I can see improvements already, and she’s able to do things much better whereas before she was really stiff,” John Roesslein said.

The difference was so noticeable that she created a video comparing her hand movement: The left was able to move much quicker than before while her right was still catching up.

“It’s little things that I’ve noticed. They’re not huge changes but for me it’s big,” Ava Roesslein said.

Ava Roesslein said the doctors at the clinic told her she could continue to see improvement over the next six months. She is excited to see where her recovery goes, considering how much better she felt after a few weeks. Although she doesn’t know what’s next for her, she said that receiving more stem cell treatments could improve her struggles with CP even further, and after her six months she will make her next move.

“At the end of the day, I knew when I did this I would rather go for sure than sit back and wonder ‘What if this had worked?’” Ava Roesslein said. “I said ‘I’m a risk taker and I’m going to go try it.’”

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