Naomi Havlen
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.”
| The treatment |
Dr.
Greeta Shroff’s procedure starts with daily injections of
embryonic stem cells at the injury site. For Amanda 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
— and Boxtel has spoken to several of them.
“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.” |
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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.”
Always optimistic
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.
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