But, Amanda Boxtel is fighting back
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.
Tomorrow, Boxtel is getting on a flight to Delhi, India, where she will 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 can’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. “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.”
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 reaches 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 is 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, that 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 furthest in the past 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.
Dr. Shroff’s procedure starts with daily injections of embryonic stem cells at the injury site. For Boxtel, that means a spinal tap. She also will get injections of the stem cells into her muscles and receive Physical Therapy every day.
“I applaud her for having taken it upon herself to do something radical for patients who have been deemed incurable,” Boxtel says. “To my knowledge, India is the only country in the world that has been practicing embryonic stem cell treatments on human patients for five years with nothing but success.”
The largest known risk is the development of a teratoma, or benign tumor. No other patient has ever experienced teratomas as a result of Shroff’s treatments – Boxtel has spoken to several of them (see sidebar).
“Dr. Shroff is confident I’ll see some progress,” she says. “I know it’s a big leap of faith and sometimes its scary, but I’m full of excitement and anticipation.
“A friend said, ‘Amanda, you’ve touched the valley, and now you’re going to touch the world.’ If I can be an inspiration to people, and make a difference, that’s what I want to do.”
Going from sitting to walking
Ask Shelina Halani what she says when asked if she sees the ethical downsides to embryonic stem cell treatments, and here’s what she says:
“I tell them to come and sit in this wheelchair for a while,” says Halani. Two years ago, the Atlanta resident was injured in a car accident 25 days after her wedding day. Halani was paralyzed from the waist down as a result of the spinal cord injury.
Today, with the help of leg braces, she can walk about 20 steps before resting. Halani has been a patient of Dr. Geeta Shroff’s since last April, visiting Delhi, India, twice for the doctor’s two month-long rounds of experimental embryonic stem cell treatments.
“Every day Dr. Shroff would inject stem cells into the area where my spinal cord injury is – into my Lumbar region,” Halani said. “I got other injections of the stem cells into my muscles, and I did physical therapy everyday. Now I can really feel a lot – there is a pressure on my legs, and my hips are giving me the movement to walk, with the help of a walker.”
Halani is originally from Bombay, India, but lives in Atlanta with her husband. Her uncle, who lives in London, was the person who saw a story on Dr. Shroff’s experimental stem cell treatments on TV, and told his niece to look into getting help. She is going back to Shroff’s Nu Tech Mediworld in Delhi for another treatment in July, and will meet Basalt resident Amanda Boxtel in person while she is there.
As well as making progress at being able to walk, Halani has increased bladder function as a result of the treatment. At home in Atlanta she massages her muscles, performs exercises and practices walking a little at a time.
“Dr. Shroff said 60 to 70 percent of this therapy is exercise, and just 30 to 40 percent is the stem cells,” Halani said. “These two things go hand in hand – if you don’t exercise, your muscles will stay dead.”
Halani also gets treatment from the Shepherd Center, that specializes in Rehabilitation for spinal cord injury victims. She said she has already shown doctors who told her she would never walk again her progress.
“I’m not walking like a normal person, but I’m sure I’ll get there,” she said. “I’m so excited about it – there are miracles taking place in India.”
By Naomi Havlen
Aspen, CO Colorado