But, Amanda Boxtel is fighting back
Amanda Boxtel sits with Tucker in the Hotel Jerome Courtyard. (Paul Conrad/The Aspen Times)
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By Naomi Havlen
Aspen, CO Colorado
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."
The 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 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."
Valley support
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.
The treatment
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."
Naomi Havlen's e-mail address is nhavlen@aspentimes.com
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