Posted: May 30, 2009 12:19 PM
Updated: June 6, 2009 11:42 AM
A local teen battling a genetic disorder will embark half-way around the world Saturday
for stem cell treatment. Why? Because it's not allowed in the U.S.
Seventeen-year-old Nate Redman of Grand Island looked closely at the picture album his sister made him Friday afternoon. Seventeen years of memories, including wrestling and marching band, have slowly faded from his sight.
"I can't read music and my balance made it hard to march. I love wrestling, I've been doing it since I was six-years-old, but I just couldn't do it anymore," he said.
What was diagnosed in eighth grade as Stargardt's disease--a form of vision loss--was rediagnosed three weeks ago at Children's Hospital and Medical Center in Omaha as Spinocerebellar Ataxia Type 7. Nate started noticing loss of coordination and speech about a year ago.
"My balance, speech, vision is all connected," he said.
President Barack Obama lifted an embryonic stem cell research ban in America back in March, but the country is still far behind what China is doing: treating specific genetic diseases with adult stem cells.
Redman's treatment will use adult stem cells, from an infant's umbilical cord.
"They take and culture the cells, grow them, and then inject them. In Nate's case, they'll go into his spinal column," his dad, Doug, said.
This isn't a cure for the Grand Island Northwest soon-to-be senior, but it's a start.
His mom started a blog to detail this rare, genetic disease, which is similiar to MS, except that it's neurological. MS is considered an autoimmune disease. The only treatment available for SCA Type 7 uses adult stem cells. While not as controversial as embryonic stem cells, treatment is still banned by the FDA.
"The FDA treats stem cells like a drug," Doug Redman said.
Stem cell treatment can't be approved until on-going trials are successful, which Redman said could take another five to ten years.
"With this type of condition, we don't have that much time to spare," he said of the progressive disease.
China, however, allows treatments now.
"Obviously, the big thing is that we slow the progression down until we have options in the
U.S.," he said.
So, Nate and his mom are off on a five-week trip to China. Six stem cell injections into his spinal column will be followed by speech and balance therapy.
"That it could just keep getting worse is kind of a big deal for me, but the fact that I have
hope it might get better is really promising," Nate said.
Reporter's Notes: Stacia Kalinoski
Doug Redman said there's a 75 percent chance Nate will see some improvements, but he'll likely have to go back to China every year for more treatment. Since the procedure is out of the country and not FDA-approved, insurance will not cover it. Doug said they're using Nate's college funds to pay for it.
Nate is thinking ahead to attending a community college after high school, but he and his dad say it all depends on how the treatments work. Right now, he uses brail to get by in school and cannot drive.
For updates on his progress, check out his family blog:www.stemcellschina.com/blog/nateredman.