Adventures of ‘Michael’s Angels’

by Catherine Lutz, Aspen Daily News Staff Writer

Sunday, August 10, 2008

http://www.aspendailynews.com/

They half-jokingly call themselves “Michael’s Angels” — after Michael Fox, co-owner of the Aspen Club, who has opened the Club’s doors to  help Amanda Boxtel, Kasie Burtard and Leah Potts in their fundraising efforts.

It’s an apt comparison to TV’s famous female trio. The local women are  every bit as tough as they are feminine, full of spunk and passion. But  instead of battling bad guys with guns, they’re fighting their way out of the wheelchairs and walking aids that have limited their movements for a combined 30-plus years, with human embryonic stem cells.

And it seems to be working.

The women’s challenges, however, are today almost more financial than  physical. All three have experienced marked physical improvements since  starting embryonic stem cell treatment at Dr. Geeta Shroff’s clinic in India. But with multiple trips costing tens of thousands of dollars  each (not to mention time off work and zero insurance coverage), fundraising has become as much of a key focus as everything else Boxtel, Burtard and Potts are doing to be able to walk again.

“This treatment is not available anywhere else in the world, and I see it as being injected with the divine gift of life,” said Boxtel, trying to summarize the complex process.

This Tuesday, the Aspen Club is once again hosting an evening of  awareness for “Michael’s Angels.” From 5-8 p.m., everyone is invited for live music, free food and drinks, and the opportunity to find out more about their unique experiences. There’s no ticket price but donations are of course encouraged and appreciated.

Progress

Most valley residents are by now familiar with the story of Boxtel,  co-founder of local nonprofit Challenge Aspen, who has been confined to a wheelchair since a skiing accident rendered her a paraplegic more than 16 years ago.

Last year, Boxtel became the first American woman to ever receive human embryonic stem cell treatment, and her experience — told on her Web site, via an e-mail blog and in a forthcoming book — has drawn intense curiosity and numerous inquiries from others with similar injuries.

Two of those people are Burtard and Potts, who followed Boxtel’s blog and  were taken under her wing as she explained and encouraged Dr. Shroff’s  pioneering work. An end-of-the-year fundraiser at the Aspen Club last  December raised $33,000 for each of the three women to either begin or  continue human embryonic stem cell treatment in India.

“Knowing Amanda did it and had huge success really helped,” Burtard  said at the time. “I’m so blessed that Amanda is in our valley and  introduced it, because otherwise it probably would be five more years  before I could convince my family to let me try it.”

Illegal in the United States, human embryonic stem cell treatment was  pioneered by Dr. Shroff, who developed a single embryo in a lab from which she created multiple stem cell lines. The treatment has been used  on a number of disorders, including terminal ones, and in the last two years 72 patients with complete spinal cord injuries have seen an average 63 percent improvement, said Boxtel. That level of improvement, she said, is astounding because most of these people were given no hope of even 1 percent improvement in their lifetimes.

In her own blog, Boxtel says her body has changed “miraculously” since  her first stem cell injection in June 2007. She writes of wiggling  toes, feeling her leg muscles and wearing a dress for the first time in 16 years while “standing proud” in leg braces.

“My legs are continuing to get stronger and my body is coming alive,” she wrote on July 24, and earlier this week she proudly showed off her ankles, which used to be in a permanent state of swollenness.

Boxtel, who lives in Basalt and is a professional speaker and coach, has made three trips to India so far for embryonic stem cell treatment, part of a three-year plan that involves going back every four to five months for one month at a time. The fourth trip is booked and planned for Oct. 23-Nov. 26   — though she still needs to raise money for the $15,000 stay — and her budget for next year, she figures, is $78,000 for three treatments.

Asked whether she feels the money is being properly spent, Boxtel answers, “I can’t put a dollar amount on my ability to pee again.”

Boxtel has made it her mission to tout the treatment she so fervently believes is “life giving life.” She points to Burtard, who after her initial session in India can stand without leg braces by locking her knees.

Burtard, 26, is the youngest of the three women. A valley native and 2000 graduate of Roaring Fork High School, Burtard was in a serious car accident in 2002 that left her paralyzed from the waist down. Burtard is no stranger to traveling for treatment — for two years she traveled to Texas almost every other month for physical therapy — but India was a whole new ball game.

Comparing notes on treatments, Burtard said she hardly felt anything from a procedure that caused some pain in Boxtel and Potts. She giggles about her ability to eat fast food while the others expressed concern about their diets in India (especially since healthy food is a component of getting better). And she seems to be taking in stride her life being turned upside down again — while in India her landlord sold her apartment and she was homeless for one-and-a-half months.

But Burtard was the first to agree that such a drawn out course of treatment can try a person’s patience. Embryonic stem cells, like babies, take time to gestate, and while as many as half will die off, the others need time (about five years, it is believed) to fully integrate themselves into the body and cause the desired changes.

“When I was in India I wasn’t impatient, just frustrated that it wasn’t getting any better,” she said. “But I know it’s not going to get any better unless I try really hard.”

Burtard, who now lives in Silt and works as a nanny, is planning to go back to India in September.

Potts, who came back from her first three-month treatment just three weeks ago, joked that “by the end of it I felt half-Indian,” because of the sheer amount of time spent there and the fact that the 100 million stem cells a day she received as part of the treatment all come from one Indian embryo.

Potts, like Boxtel, was injured in a ski accident, but is a recovering quadriplegic who could walk with the aid of a cane — even before starting stem cell treatment she has defied her doctors’ expectations. But her body, which was changed so dramatically nearly 10 years ago, is coming back, she writes in her blog. Her posture is straighter; her balance is better; limbs and muscles are functioning more as they should; she has fewer spasms throughout her body; and she is completely off her pain medicine.

“I thought I would (see improvements), but it’s still hard to believe,” said Potts, who uses a recumbent bicycle to get around and exercise her legs at the same time. “It seems too good to be true, but it’s true not without dedication and sweat and tears.”

Potts, 32, lives in Aspen and works as a spinning instructor at the Aspen Athletic Club. (Known to many as Leah Rowland — Potts is changing her name because she’s getting divorced.) She is hoping to go back to India Oct. 27, depending on how fundraising efforts go.

On Wednesday, Boxtel, Burtard and Potts appeared on Jeannie Walla’s Channel 19 TV show, “Showcase Aspen,” and they retell their updated stories time and time again to friends and even strangers wherever they go. As far as being home versus being in India, there they were able to focus solely on themselves and their improbable journey. Here, they lead lives like most of us: having to work, cook, clean and walk their dogs — on top of raising more money and focus on an intensive six-day-a-week program of physical therapy, yoga, massage, standing in leg braces, and keeping on a healthy, nutritious diet. They’re gushingly grateful for the family, friends and therapists who help, often without compensation — and in particular for the caregivers who sacrifice so much to travel with them to India as required by the clinic.

And there’s a lot of crying and frustration, they say. But, as Potts puts it, “I choose to make this my lifestyle. This is what I do.”

For more information: www.amandaboxtel.com [1], www.leahpotts.com [2], www.helpkasieburtard.wetpaint.com [3]

lutz@aspendailynews.com