ASPEN Amanda Boxtel is 5 feet 7 inches tall. You might not know that, since for 15 years - and still today - Boxtel spends all of her waking hours in a wheelchair.But having returned earlier this week from Delhi, India, where she underwent two months of experimental embryonic stem cell treatment focusing on restoring strength to legs that haven't moved since a skiing accident in 1992, the Basalt resident now has photos of herself standing up during physical therapy sessions."I feel like the Eiffel Tower when I stand up - really, really tall," she said with a laugh. "It's the first time my boyfriend saw me stand up, and he's 5 foot 10. It was nice to look him in the eyes, and not up his nostrils."Boxtel was standing with the help of leg braces ordered by Dr. Geeta Shroff, an Indian doctor who uses a groundbreaking embryonic stem cell therapy to treat people with incurable diseases or who have had injuries deemed irreversible. In Boxtel's case, doctors told her after she became paraplegic that she'd never walk again. And while she'd love to prove them wrong some day, she traveled to India in June saying that a 1 percent improvement in her lifestyle would be a miracle.But at this point, her list of accomplishments far surpasses a 1 percent quality of life improvement. Boxtel is able to wiggle the big toe on her right foot and the smaller middle toes on her left foot. She has developed her hamstrings and quadriceps, and a nerve burning pain that she's learned to live with in her legs has subsided by 50 percent, she estimates.She is increasingly flexible and no longer feels stiffness or spasms in her legs. Her back muscles are stronger around her spine, giving her more balance, and her overall energy levels have skyrocketed. And although she is ecstatic about the changes and the "awareness and 'connectedness'" she said she feels in her lower body, she knows the road to improvement is not a short one."What the world has to understand is that this is not an overnight thing," she said. Just as the gestation period for an embryo to become a human baby is nine months, the stem cells that have been injected into Boxtel's body will take nine months to continue to grow, and then will develop continuously for the next two to five years.
"It's critical that I play my part as well, continuing with physical exercise and therapy, and re-training my muscles and nerves. I'll continue to see improvement for the next two to five years, which is why it's critical that people understand that this is not an overnight, miracle fix. It's going to take some time to re-wire."This initial treatment in Delhi came with a $30,000 price tag, which Boxtel managed to raise locally with the support of friends and acquaintances. She'll travel back to India for more treatments in the future - she's planning a trip for three weeks in December, in time for her 40th birthday."I thought it would be a nice birthday gift to myself to go get more stem cells," she said.Dr. Shroff's therapyIn India, it is legal to practice experimental treatments like embryonic stem cell therapy on patients whose injuries or diseases are deemed permanent or incurable.Shroff, the physician, developed her groundbreaking methods as a fertility doctor in India, where she used a sperm and an egg in her clinic to create her own source of embryonic stem cells. Five days after a sperm fertilized the egg, stem cells began to multiply rapidly. As a result, all of the stem cell lines Shroff uses in her treatments have come from that initial fertilized egg. Not everything about Shroff's experiments are known, since as a medical entrepreneur she would like to obtain a patent for her methods, rather than sharing the procedure with the medical community.
What is known, however, is that Shroff's patients receive injections of stem cells into their muscles and (in the case of patients with spinal-chord injuries) into the place where their spinal chord was injured. As a result, her patients have experienced everything from increased sensation in their paralyzed limbs to walking with the help of leg braces.The largest known risk of this treatment is the development of a teratoma, or benign tumor. No patient has ever experienced this as a result of Shroff's treatments, and Boxtel notes that she herself has experienced no negative side effects.A typical dayBoxtel lived in a small apartment during her time in Delhi, taking an 8:45 a.m. car six days a week to the Nutech Mediworld center, where Shroff and her staff treat patients with intense regiments of physical therapy and injections of stem cells. Boxtel said her physical therapy lasted from 45 minutes to an hour as she got stronger, and each morning she would either receive an injection of stem cells into her arm, or a treatment intravenously in drip form, to her veins."With each vial or syringe, they would give me over 50 million stem cells," Boxtel said. Over the past two months, she also received a spinal tap five times, a long procedure in which the cells were injected directly into the area of her vertebrae that shattered when she fell during a freak accident at Snowmass Ski Area 15 years ago. After each of these major procedures, Boxtel said she experienced some sort of improvement, whether that be wiggling a toe or the ability to empty her bladder without the help of an implanted electronic device she's been using for the past seven years."A catheter would be inserted into my spinal chord, and I could feel the stem cells like liquid jelly bleeding into my lower limbs," she said. "I could feel everything coming to life, literally, and things did. It's as though the stem cells fired up the cells and nerves in my body. It was instantaneous."There's a hint of irony about the re-awakening of Boxtel's lower extremities: While she said her gluteus maximus has strengthened enough that she can crawl backwards more easily, she is now aware for the first time in a long time that she spends every day sitting down in a wheelchair.
"I feel like I have to stand up, because I'm sitting on my bum all the time," she said. "And all day long, I feel tingles in my toes."Shroff encouraged Boxtel to work on standing and walking with leg braces and while holding onto parallel bars because the practice would help her stretch out her tendons and muscles. Now that Boxtel is back in the Roaring Fork Valley, she said she will use help from friends to continue physical therapy exercises six days a week."I left with the agreement that I would play my part, to continue to keep my body alive and do therapy so when I do go back, I'll still be if not the same, better," she said. "I have to give my body the best possible chance."A part of historySpending two months in India was an adventure in itself, Boxtel said, as was meeting Shroff's patients who come from all over the world. At the time of her treatment, Boxtel was the only American patient there simply because word of Dr. Shroff's treatment hasn't spread across the United States.A woman from Washington state with ALS, also known as Lou Gehrig's disease, arrived at Nutech Mediworld center the night Boxtel left Delhi. "She said, 'I'm here because of you,'" Boxtel said. "So many people from around the U.S. have been in touch with me, some newly injured, looking for treatment. I think there is a wave quietly spreading about this revolutionary treatment, and I want to make sure other people get this opportunity. They shouldn't be denied this gift. I see it as life giving life."Naomi Havlen's e-mail address is email@example.com