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Prosthetics at the Middle of the World
By David Krupa, CP Lourdes Pilco woke to the babbling of her son. Here,
so close to the equator, the sun rises early, yet it was still
dark. Lourdes fumbled for a moment, the faint light of dawn
bringing her reality into focus. Her husband started to move and so
did her gaze, now darting to the beautiful two-year old. With
powerful motherly love and concern, she checked to see everything
was fine and smiled at the boy's soft dark hair, his delicate,
playful hands, and the little feet that would soon carry his tiny
body.
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Lourdes (right) and Rene Pilco. Photos provided by David Krupa, CP. |
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Filled with happiness and pride she looked down.
Her own legs did not make it to the floor anymore, amputated and
disfigured just like her right arm, devoured below the elbow. All
of this had happened slowly over the past few years, and both her
brother Rene and she suffered the same burden. Dried blood on the
fingers of her remaining hand was a reminder of the disease's
unforgiving progress. Today, everything was the same as yesterday,
but as the grey hue of the sky transformed to blue, hope
illuminated the room.
I met Lourdes Pilco in Quito, Ecuador, on the morning of January
31, 2005. That Monday was day one of a weeklong prosthetic clinic
coordinated by the Hermano Miguel Foundation and a team of five US
O&P professionals, two technicians, and support volunteers
titled "Próteses por Ecuador." This alliance's mission is to
provide free prosthetic rehabilitation to severely poor Ecuadorians
while fighting for disability rights and social reintegration of
rehabilitated patients.
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Lourdes and David Krupa, CP. |
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In the weeks prior to our arrival, the staff
interviewed, evaluated, and selected 50 patients needing prosthetic
care. Back in the United States, we raised awareness, and donations
of used prosthetic limbs, critical to these projects, came
trickling in. Otto Bock, SPS, Ossur, Friddles Orthopedic,
ProtectAir, and the Barr Foundation supported the project with
donations, components, plastics, and plaster.
Arriving at the clinic, we were greeted by a group of people
waiting outside the door, propped against the wall, and lined up on
chairs. They ranged in age from 11 to 75. Many were parents; half
were victims of traumatic accidents. Most did not have prostheses,
and amputation tended to be the sole reason they could not provide
for themselves or their families. They all looked hopeful, while we
were a little nervous - unsure if it would be possible to help
everyone with the time and materials available.
Ubiquitous Problem
The healthcare situation for disabled people throughout the
world, including Ecuador, is troubling. The United Nations
estimates that 80 percent of the world's disabled persons live in
developing regions. Within Ecuador 70 percent of the population
lives below poverty level, and the majority of people with
amputations and their families are fated to this life. The
Ecuadorian economy is built upon oil exportation, agriculture, and
manufacturing - thus demanding a large manual labor force. The
sudden loss of a limb in a traffic accident instantly reduces the
chance that one may find gainful employment. Furthermore, most of
the transportation infrastructure is poorly maintained and
inaccessible for the disabled. Mobility and independence are so
limited that many of the patients we saw resorted to homemade
crutches, used wheelchairs, half-destroyed/ barely functional
prostheses, and - in the case of one patient - using a pair of
someone else's artificial limbs.
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Mike Oros, CPO, training Rolando Icaza. |
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More than the dilemmas of reduced mobility and
economic strife, people with amputations face attitudinal barriers
within society. A common view is that they are less than human. As
the week wore on, I would come to discover that even some of the
patients themselves believed in their "subhuman" status.
A Way of Giving Back
I cannot force anyone to believe in the necessity of these
projects, but here are my own motives. Attempting to help allows me
to face two inner struggles. First, my own amputation has never
been disabling and maybe never will be, because of the quality of
care available in this country. Should luck of the draw sentence
anyone to the hopelessness of amputation without rehabilitation? I
am frightened by that hopelessness.
Secondly, despite obvious economic realities, I feel conflicted
about selling my services when there are people in the world who
can't buy them. Volunteer Mike Oros, CPO, said that, "People with
disabilities in Ecuador are unable to lead active, normal lives,
and donating my time was a way of giving back and helping those who
do without the basic necessities we are able to offer patients in
the United States."
How It Began
"Próteses por Ecuador" was initiated by Dino Cozzarrelli,
CPO, from Asheville, North Carolina. Dino was born in Ecuador, grew
up in the United States, and spent much time over the years
visiting family in Latin America. Dino possesses a quality that
urges him to watch a person limping by on the sidewalk and to
wonder if and how this person can be helped. It was quickly
apparent to Dino that for Ecuadorians, especially the poor, finding
prosthetic treatment is virtually impossible.
He recognized a frontier in great need and set out to organize a
way by which the amputees in Ecuador could be served. What
impresses me about Dino more than his lofty ideals is the fact that
he proves these ideals can be made reality with enough devotion and
passion. The results over three years of "Próteses por
Ecuador" are telling - with more than 150 amputees assisted and
countless other lives touched.
Working and Teaching
The first day our team evaluated and cast roughly 25 patients.
The office staff was a machine keeping the process flowing. Our
translators worked patiently, and the Ecuadorian technicians
eagerly watched the castings and modifications. After all, there is
little point in doing this work without teaching for the future.
One of the unaddressed factors critical to dealing with the present
lack of O&P services throughout the world is education. The
frustration is not that everyone in the developing world doesn't
want to help the disabled, but rather they can't.
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Maria Mora; AK amputation from snake bite. |
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On Tuesday almost all of the other 25 patients
were seen. Our technicians pulled thermoplastic for hours and
fabrication seemed endless. We all had one goal in sight: to fit,
align, and deliver 25 AK and 25 BK prostheses by Friday morning.
We'd get up early and finish work late, and thankfully people were
taking care of us in between, getting meals together, arranging
accommodations, and coordinating transportation. As a little
reward, we were even set free to see the beautiful city of Quito,
which is nestled in a valley surrounded by Andean mountains.
By Friday morning Lourdes and Rene Pilco were teetering around
the yard on new bilateral BK prostheses and Lourdes was proudly
introducing us to her son. Amputees were hanging onto each other,
forming a literal support group. Meanwhile I was working with Maria
Mora.
She is unforgettable. Maria is 22, a beautiful, intelligent
young woman, uncomfortable in her skin and fearful of what life
holds for her. She was bitten by a snake when she was 12 and her
leg was amputated above the knee to save her life. She had a
prosthesis for a few years but outgrew the limb. Her only option
for getting to and from high school and now college was to hobble
around with what leg she had left jammed into the crook of a
homemade crutch. One of her worst fears was that no man would pay
attention to her and no one could love the "partial human" she
believed she was. By the time we finished working together all of
the other patients, practitioners and staff were up in the assembly
hall ready to begin a short ceremony. Maria did not want to go up
there, did not want to be around so many others.
"More Moving than Church"
We were all completely worn down by the week. It was clear and
sunny as Maria timidly walked by my side with her prosthesis.
Overwhelming thankfulness filled me because she seemed satisfied.
As we climbed the ramp up to the assembly, something surged in my
chest. The room was filled from wall to wall and almost everyone
turned to watch Maria walk through the door. They all were finally
paying attention to her now, and I began to cry.
An air of gratitude hovered around these people, and at first I
could not understand their unusual way of voicing this
thankfulness. They said, "This team is a group of 'important'
people, an assembly of 'high class' people, and we are thankful
that they have decided to help us, such 'lowly' people."
Hope for 'Marginalized' Persons
But I cannot figure why our lives have any more value - why we
are more important. We are all interconnected and dependent on one
another, so why would they think this? In a moment I realized that
it is because they are marginalized, unseen, untended to, and
virtually forgotten by society. My only hope is that now they can
be seen walking down the street, working, and living. Maybe, one by
one, their visibility in society can change attitudes and help
people see that "disability" is only as crippling as the barriers
we let stand in our minds and in our world.
Trips to provide prostheses in Ecuador are currently
organized once a year by the Hermano Miguel Foundation, www.fundacionhermanomiguel.org. To donate
prosthetic materials and supplies for use throughout the developing
world, contact David Krupa, CP, at 219.864.9501, or ship directly
to: Scheck & Siress Advanced Orthotics and Prosthetics, 8641 W.
95th Street, Hickory Hills, Illinois 60457, Attn: David
Krupa. 
Table Of Contents - May 2005
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