ALS patient places hope on stem-cell transplant
Pueblo woman to undergo procedure in Mexico
By Loretta Sword, The Pueblo Chieftain
Saturday, December 27, 2008

To help

An account for donations for Kerry Alvarado's stem cell procedure has been set up in her name at ENT Federal Credit Union, P.O. Box 15819, Colorado Springs, CO 80935. ENT's phone is (719) 542-5276.


PUEBLO -- She can't eat or talk or walk. She needs a ventilator to breathe. But Kerry Alvarado can still smile. And when she does, her eyes speak of a spirit that refuses to succumb to the disease that's killing her body.

The 52-year-old Pueblo West resident has amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease). ALS is a degenerative disease that slowly paralyzes all the muscles in the body. Patients usually survive no longer than three to five years beyond diagnosis.

Kerry was diagnosed in May 2005. She is running out of time.

So she has decided to travel to Mexico in February for multiple stem-cell transplants that offer her only hope for prolonged or renewed life.

The procedure, while not approved by the Federal Drug Administration in the United States, is offered by an American company at clinics and hospitals in Mexico, Europe, Peru and other places. Kerry and her husband, Javier Alvarado, learned of the company, Stem Cell Biotherapy, through one of her former co-workers at a Colorado Springs-based defense contractor.

Ironically, one of her duties there (before she was forced to retire and go on federal disability) was to coordinate the company's philanthropic efforts. After researching a number of options, she started an annual ALS fundraising walk several years before her own diagnosis drove home the real impact of the disease.

One of the co-workers who helped organize the fundraisers told Kerry about Stem Cell Biotherapy. The woman had learned about the company from a friend in Colorado Springs who is considering a stem-cell transplant to treat multiple sclerosis.

According to the company's Web site, it "was founded with the aim of offering the highest standards and quality in the production and administration of (umbilical) cord blood stem cells ... for the treatment of what were previously regarded as incurable diseases," including cancer, numerous infectious diseases, heart disease, diabetes, neuro-degenerative diseases, auto immune diseases and skin disorders.

Research in American labs has proven that embryonic and cord stem cells can be "programmed" to mature into healthy versions of whatever type of cells they are surrounded by after injected into a diseased system.

In Kerry's case, the hope is that cord stem cells will become healthy spinal-cord cells, as well as neural cells that feed all the muscles of her body.

Sitting in a motorized wheelchair during a recent interview, Kerry "wrote" responses to a reporter's questions in the air with gnarled fingers as her husband, Javier, and son, Tony Karschnik, translated.

She and her husband are willing to risk the experimental procedure, if they are able to raise the $20,000 cost over the next few months, because it offers their only hope, she said, raising her eyebrows in sync with a faint shrug of her shoulders.

Javier Alvarado said he was ambivalent about the controversies surrounding stem-cell research and transplants until he learned that some transplant recipients have experienced "miraculous" recovery from a wide range of diseases and conditions.

Critics of the process, who mostly object to the use of embryonic stem cells (Stem Cell Biotherapy uses only cells harvested from umbilical cords), "would probably feel a lot differently if they were in our position," Alvarado said.

Despite what ALS has done to Kerry's body, her husband said, "she's adapted very well. You don't hardly ever see her down."

The smile that rarely leaves her face attracts strangers at restaurants and "wherever we go," he said. "We were at the mall one day, and three women came up to us and they just wanted to touch her. She attracts people that way."

She also refuses to lapse into a life of just watching TV -- or watching her life slip away.

She researches ALS and potential therapies on the Internet, and stays in touch with friends via e-mail. She prefers the "air-writing" technique she's developed, but when she must, she also can type on a device that decodes the letters she types into audio -- in a male voice that sounds too robotic for her taste.

She types using her thumbs and the edge of her pinkies. Her husband said it took quite a few hours, but she wrote and designed a flier seeking donations to a fundraising account that has been set up in her name at ENT Federal Credit Union in Colorado Springs.

The flier recounts her trip to the Mayo Clinic in Rochester, Minn., where she went for a battery of tests that confirmed the original diagnosis of ALS in 2005.

"I cried all the way home -- all 1,000 miles," she said.

But she hasn't cried much since she got home from that trip.

"I made a vow not to spend any energy dwelling on a diagnosis," the flier says.

Since that trip, she has lost 70 pounds and undergone a tracheotomy because the muscles she needs to breathe stopped working. Slowly, she since has lost use of most of the muscles below her neck.

During a hospitalization last year, she said, a doctor she had never met told her that her incredible smile -- especially given her circumstances -- was an inspiration to him.

"I thought to myself, 'Who cares about being an inspiration. I just want to have my simple life back!'"

That simple life once included caring for and riding the horses that share the couple's yard, and shopping. She can't ride anymore but she's leaving time before her transplant in Mexico to shop in Tijuana with her full-time nurse, Cindy Ourso.

"There have been some very dark days .... We take one day at a time .... Life is not bad, it is just different," her flier says.

The Alvarados hope a stem-cell transplant will transform their lives yet again.

http://www.dailycamera.com/news/2008...ll-transplant/