ASPEN — Fifteen years ago when Amanda Boxtel crossed her ski tips at Snowmass Ski Area, she somersaulted and landed hard, severely injuring four Vertebrae. She knew instantly she was paralyzed from the waist down, and doctors said she would never walk again.
But as they say, never say never.
Boxtel is heading to Delhi, India, where she planned to begin two months of groundbreaking embryonic stem cell treatments from a doctor whose other patients with spinal chord injuries have experienced everything from increased sensation to walking with the help of leg braces. The chance of seeing even the most minute of changes in her body is an opportunity Boxtel just couldn’t pass up.
“If I have one percent difference in my Disability, that’s 100 times better than where I am right now,” she said before her trip. “I did ask my mom if she’d feel OK if I saw zero changes — she said she would be. We’re going with hope and an optimistic mindset, but we don’t want to set ourselves up for disappointment.”4
A controversial doctor
Dr. Geeta Shroff is the woman who has been making headlines worldwide for her use of embryonic stem cells — a practice that is not legal in the United States. Shroff was a fertility doctor in India when she used a sperm and an egg in her clinic to create her own source of embryonic stem cells. Five days after the sperm fertilized the egg, an embryo reached the “blastocyst” stage, when stem cells begin to multiply rapidly. All of the stem cell lines Dr. Shroff has used in her treatments have come from that initial fertilized egg.
Dr. Shroff’s practice is controversial for a number of reasons. Because of where future embryonic stem cells would come from — whether it would mean destroying human embryos — use of the stem cells is not legal in many countries and little research has been done regarding their use. The stem cells, however, are known for being able to regenerate and replace tissue in the body. In India, it is legal to practice experimental treatments on patients whose injuries or diseases are permanent or incurable. But Dr. Shroff has refused to share the results of her experiments with the rest of the medical community because, as a medical entrepreneur, she would first like to obtain a patent for her methods.
But Dr. Shroff’s treatment has experienced a large measure of success (and no negative effects have been reported yet by any of her patients), so she has gotten some exposure from the media. Australian Sonya Smith, 45, received treatment from Dr. Shroff 18 months after experiencing a spinal cord injury that left her paralyzed from the waist down. Today, she is walking with the help of leg braces that rise from her feet to her knees.
Amanda Boxtel’s mother, Jill, saw Sonya Smith’s story featured on Australian television in August, and immediately contacted her daughter.
“I had taken ‘hope’ out of my vocabulary,” Boxtel said. “Five years after my accident, I had to arrive at a place of acceptance with my paralysis, so I could live my life. I didn’t want to stay attached to false hope. But my heart tells me I have to give this my best shot.”
People who know Boxtel from her life in the Roaring Fork Valley know that when she says acceptance brought her freedom, she’s telling the truth. Thirteen years ago, she and friend Houston Cowan started Challenge Aspen, a now-thriving nonprofit that teaches disabled young people and adults how to ski in the winter, and helps them do everything else — climb, raft, horseback ride — in the summer. Boxtel left Challenge Aspen about two years ago to work on her own memoir and be a motivational speaker. Along with her wheelchair with rims that gleam a sparkly gold, Boxtel seems like a symbol of optimism and self-reliance wherever she goes.
Even so, Boxtel lives with 24-hour burning nerve pain — something she doesn’t often speak to people about because “it doesn’t serve me to talk about it with others,” she said. “I’ve got to focus on positive ways to deal with my pain.” In 2000, Boxtel underwent successful surgery to get a vocare bladder implant, which put an end to the Incontinence she had been experiencing since the accident in 1992. Even so, she must use an external controller with the implant to use the bathroom. No matter how much she accepts life in her current state, small improvements would be like miracles to Boxtel.
Through e-mail and phone conversations, Boxtel spoke with Dr. Shroff about the experimental treatment. Each treatment involves two full months in Delhi, at a cost of $30,000. That was when Boxtel turned to the Roaring Fork Valley.
In an e-mail to friends, Boxtel explained her desire to visit Dr. Shroff, and explained the steep cost of each treatment. And as often happens in this tight-knit valley, that e-mail was forwarded along until most people who know Boxtel had read her request.
“That e-mail took on a life of its own,” she said. An acquaintance parked his car when he saw Boxtel on the street, ran over and handed her $400 in cash. Boxtel was overwhelmed with the support, from those who gave her $10, to the person who wants to pay for the entire $30,000 treatment.
But this isn’t a one-treatment procedure. Boxtel’s spinal cord injury, 15 years ago, is the oldest Dr. Shroff ever will have treated. One of her patients who was injured about 10 years ago is now walking after a total of 12 treatments in Delhi. Boxtel knows that she might have a long way to go in seeing any improvements at all.