WKOW 27: Madison, WI Breaking News, Weather and SportsJanesville teen undergoes experimental stem cell treatment

Janesville teen undergoes experimental stem cell treatment

There are more than 25-thousand Americans living with a condition called Spinal Muscular Atrophy.

SMA is is a neuromuscular disease that results in progressive muscle loss and weakness.

This summer a Janesville teen went to great lengths in an effort to slow the progression of his condition.

He spent most of his summer on the other side of the world, undergoing an experimental treatment that he says has worked like a miracle.

For 16-year-old Kyle Knopes, Opening and closing his hand is a big deal.

"A lot of people wouldn't think of it that way, but when you haven't done it for a long time and you finally do it, it's like, something to be proud of," says Kyle.

He was diagnosed with Type 2 Spinal Muscular Atrophy as an infant.

He never walked, and has been in a wheel chair since he was 18 months.

But this summer, a trip half way around the world gave him hope.

With mom and brother by his side, Kyle spent more than a month in a Chinese hospital, where he received experimental stem cell treatments that are currently not offered here in the U.S.

"I had 8 injections while I was there, over a 40 day period," says Kyle.

The stem cells used in his injections were actually harvested from umbillical cord blood, and not from the controversial embryonic stem cells.

Kyle says, "After my 1st injection, I rolled from my back to my right side, which I hadn't done since I was 6 years old."

According to Kyle, the injections, along with the intense physical therapy he received while in China have helped a great deal.

"Mainly upper body strength, both my arms, head and neck control," says Kyle.

It's also obvious when Kyle picks up a pen.

Writing has become much easier.

He says, "I can write longer without getting fatigued and my writing doesn't get worse as I go on."

Kyle's personal aid of six years is amazed by the progress he has made since returning home the end of July.

"He's just been a miracle, I get tears in my eyes," says Shirley Zirbel.

As she works with him, she comments on how high he can now lift his arms, and how he can open his hands.

She has also noticed an increase in his energy.

"Kyle has always had an awesome attitude towards life. He can inspire us all because he's always had that go get em attitude," says Zirbel.

That attitude may explain why within just months of learning about the experimental treatment in China, Kyle was on a plane.

"It's unknown, but it's a definate possibility to stop or slow the progression of the disease. They can't say one way or another because it is experimental, but that's our ultimate hope," according to Kyle.

Despite any possible risks involved, Kyle says the trip was well worth it.

He says, "The worst that we were assuming is that I would come back the same, and that was okay. But obviously with our improvements, very glad we went."

These stem cell treatments have not been approved in the U.s., because the safety and efficacy has yet to be confirmed.

But there are studies underway that hope to prove it is a safe and effective treatment.