Local woman with rare disease raising money for treatment

A small piece of orange paper in a scrapbook offers a simple message to Angie Mathews.

"Some say I am disabled, but you know that isnt' true, I simply have a challenge a little different from you," the poem, titled "Challenged," begins.

Mathews' challenge started at an early age in Hardin County, she said, when she developed infantile nephrotic syndrome. When the treatment was completed, she had other problems.

"When I got out, I couldn't run anymore," Mathews said.

She was 9.

"My mother thought it was an after-effect of that (the kidney issue)," she said. "The kidney specialist said no. They never could figure it out."

Later, other minor problems presented themselves. For example, if she was in a room and someone turned the light off, Mathews would fall.

She had mild problems with coordination through the years, but it wasn't until she was in her early 20s that the problem was pinpointed. She was carrying her young daughter, Mackenzie, in her arms when she fell with no explanation. She went to chiropractor, Dr. Brian Hester.

"It was Hester who figured it out - he was the one who actually got the diagnosis," Mathews said.

Confirmation came on March 12, 1998 - a date she won't forget.

After a test from Washington University in St. Louis Medical School's neurology department, Mathews received a letter stating she had Friedreich's ataxia. The condition is a progressive neurological disorder that gradually robs those afflicted of the use of their limbs, contributes to heart disease and can increase the likelihood of developing diabetes.

Today, Mathews, 41, uses a wheelchair to get around. She lost the use of her legs in 2007 when she broke her leg. After the leg healed, she couldn't hardly walk.

"I used a walker to get around for a while," Mathews said. "But then I got where I couldn't use it."

There is hope that an experimental and controversial treatment can help her condition, though.

Mathews currently is trying to raise $7,100 to pay for stem cell therapy from the Stem Cell Rejuvenation Center in Phoenix. She said she looked into the idea several years ago, but at the time it was not feasible.

"I read about it several years ago, and they were doing it in China, but it was really really expensive," she said. "I forgot about it, but started thinking about it and looked into it again. It isn't nearly as expensive now."

The stem cell therapy conducted in Phoenix uses a patient's own stem cells taken from adipose (fat) tissue and reintroduces them into other areas of the body, according to the clinic's Web site.

Stem cells are "master builder" cells that contain instructions for all tissues of the body. The idea is by reintroducing them into parts of the body where damage has occurred, the stem cells.

Currently, this type of stem cell therapy has not received U.S. Food and Drug Administration approval.

In fact, FDA has some specific warnings for consumers considering such treatment. Only one stem cell treatment, called Hemacord, has been approved. It is an umbilical cord-stem cell treatment for patients with disorders affecting the body's blood-forming system.

A quick online search shows many stories of scams and false promises related to stem cell therapy clinics. However, a visit to the Stem Cell Rejuvenation Center Web site seems a little different.

Nearly every page carries a disclaimer clearly noting that the treatment is not FDA approved. No claims as to the success of such treatment may be found, and there are no client testimonials.

The price - the $7,100 - appears to be the same for each person. A representative of the center did not return calls for comment.

Mathews, meanwhile, said she is well aware that the treatment has not received FDA approval. She called and talked to a representative, who she said assured her that they weren't selling false hope. That person also told her she may not see any improvement as a result.

For her and others with progressive conditions, though, time is of the essence, she said. By the time such a procedure might be FDA-approved, it might be too late for her and others.

"I could get some of the health benefits from it, but not fully get better," she said. "Or, I might not improve at all. But it would be worth it to have a chance to reverse the effects, or at least keep them from getting worse."

A family friend, Louise Vaughn of Hardin County, has been helping raise some funds for Mathews. Vaughn said this Saturday, the Keeling Hill Church near Elizabethtown will have a chili supper from 2 to 7 p.m. where donations for Mathews will be accepted.

Another friend set up a Facebook page to help raise funds, titled "Stem Cells for Angie Burton Mathews."

Mathews said she is deeply appreciative of the help.

"It's hard to imagine the kind of support I've been getting from friends," she said. "I don't know if people realize just how much it means to me to have this."