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Young Roxana suffers from PFFD = a significant congenital growth abnormality
of her right femur. At age 5, the difference in Roxy's leg length
was already 12 centimeters. Without intervention, Roxana would face
a lifetime of heavy Romanian prosthetics and/or a wheelchair, and a dismal
future with a severe physical handicap in a country where deficiencies are
scorned and viewed with prejudice.
* read more about PFFD at the bottom of this page.
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We brought Roxana with her mother and a translator to America with
us for surgery in autumn, 2001. The child's case is very severe. The
doctors have taken a very conservative approach, which has meant a lot of
"down time" for everyone . . . waiting! Some creative solutions
had to be discarded because the lifetime-maintenance resources for her care
are limited in her home country. Roxy's surgical intervention is to begin
spring, 2002.
* learn about Roxana's treatment plan the bottom of this page.
Pictured (above) are Dave, Adina (translator), Roxy and Ana (mother)
at the Bucharest airport on departure day.
(below) Roxy's father stayed behind, to work. An unemployed butcher,
Dan was fortunate find a job in Germany during the family's absence. Though
it is sweat-shop labor, the $400 he earns monthly could subsidize the family
for many years.
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In addition to PFFD, Roxana was born with a congenital absence
of a portion of her left arm, having only a rather useless stub of a
thumb (below). Fertility drugs are responsible this deformity. The main
focus of the surgical intervention is her leg, but the doctors also encouraged
fitting her with an arm prosthesis after the removal of the skin tag. (see
photos below)
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Cosmetics are not normally a priority for our intervention, but
the doctors graciously agreed to do a scar-revision on Roxy's thigh, making
more presentable the remnants of curious doctors who probed surgically but
never resolved anything. Roxana is, understandably, fearful of more surgeries,
but she is doing better with each clinic appointment!
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The thought of artificial limbs is often more frightening to the parents
than the child. Here Roxy inspects various models of lower arm prosthetics,
finding out how they work and trying on the various parts. She was quite
impressed! Soon Roxy will have TWO functional arms!
This family is so fortunate to have the opportunity for such fine help;
the hospital's wait list is endless! There is currently a moratorium on
new foreign patients at The Portland Shriners' Hospital (and therefore Heart
for Romania is not accepting new applications for medical-assist). So
Roxy is especially fortunate to be here now! Shriners commit to follow their
patients to age 18. Heart for Romania has mirrored that commitment.
* see how you can help ... at the bottom of this page. |
It's always cold in doctor's offices! Here's Roxana, dressed in summer
clothing and wrapped in a blanket to stay warm. Though initially afraid,
Roxana has come to take her clinic appointments at The Portland Shriners'
Hospital right in stride. Here we wait for the next onslaught of specialists.
Everything takes time, but with the Shriners' very expert services offered
completely free of charge, we beggars must not be choosers. Though it takes
a good deal of trust and patience, we frequently remind ourselves and our
families to try to accept the inconveniences!
Roxana, there you are! What fun it was for the girls to watch
themselves on the evening news!
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Bringing a child to America involves more than hospitals and clinics.
Here we are on Conklin's patio, a few days after we landed in USA. Enjoying
Dave's surprise birthday party, Roxana joined in the fun. Roxana is such
a sweet little girl and her mother is so pleasant; they are both easy to
have around.
Leg-lengthening is very painful; we pray that Roxana and her mother
find the "deep wells" for drawing strength to endure the process.
* Learn about Roxana's treatment plan the bottom of this page. |
KOIN TV in Portland, Oregon, heard about Heart for Romania's
work with special-needs foreign children and filmed a short feature-clip
on our foundation at the Ronald McDonald House. Here the new movie stars
pose with host Christine Miles and her KOIN camera-lady.
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We've never seen a Romanian who doesn't love to be photographed, and
Roxy is no exception. Roxana settled in quite nicely, don't you think?
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We went on a church picnic an event probably rather rare in their
Orthodox culture. Our mission is not to indoctrinate; rather, our goal is
to have them experience as much of the foreign lifestyle as we can avail
to them. Memories are the sweet aroma of days gone by!
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Our first Sunday home was "Western Day" at church, so
the especially casual atmosphere must have been quite a shock when compared
to their conservative church experience overseas. Our church supports
Heart for Romania in various ways, so our friends were especially
pleased to greet the newest Romanian visitors.
 We never dreamed our translator's
stay would last this long! Though we thought Adina would only be needed
for 4 months, she has agreed to stay through the first surgery. We are not
allowed to pay her, so we try to show our gratitude in other ways. We are
thankful to have Adina, and hopefully this visit has been a positive life
experience for her, as well!
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Although arrangements were made in advance for the three girls
to stay at Ronald McDonald House in Portland, until Roxy actually has surgery,
we had to find alternate housing. A Romanian family of 8 graciously agreed
in August to house the trio for a month. It was a good fit, and Roxy
and Ana will live with them for over a year! The translator must go back
to her job teaching kindergarten in Romania soon after Roxy's surgery. Visa
extensions are pending! 
While Dave was in Romania playing Santa Claus, Jean paid a 'Santa Visit'
to the host family in Oregon City. The children were thrilled with the assorted
small gifts from our foundation. It was a fun way to express our appreciation
to the family for their wonderful hospitality! |
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All their experiences are what memories are made of. Roxana may have
many such trips before her treatment is finished, but the promise of
a future with function should, hopefully, lure the family to complete
her treatment, whatever form it ends up taking! In the end, it is all in
the doctor's hands, guided by the Lord!
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Thank you, Heart for Romania sponsors, for giving this child
something to smile about: a future to look forward to with anticipation
and hope, free from the otherwise certain bondage of heavy prosthetics or
a wheelchair.
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 What is PFFD?
PFFD stands for Proximal Femoral Focal Deficiency. It sounds very complex,
but when you look at each word individually it is actually a very good description
of the condition.
- * Proximal - nearest the point of attachment or
center of the body
- * Femoral - pertaining to the thigh bone
or femur
- * Focal - pertaining to a focus
or starting point
- * Deficiency - a lack; less than the normal amount
In other words, the end of the thigh bone closest to the hip is too short
or not completely developed. For more info, a visit to the PFFD
Virtual Support Group will get you started.
What is Roxana's Treatment Plan? (Feb. 2002)
After assessment under anesthesia and arthrogram of the right hip, it
was determined that the child would benefit from lengthening of her femur,
with potential foot amputation in the future and subsequent fitting with
a partial lower-leg prosthesis. Also indicated is possible hip reconstructive
procedure. One of these processes is scheduled to begin in late March, 2002.
The child could possibly need to remain in America for up to a year for
completion of one of those process. The child's treatment will likely require
a multi-stage approach, and it is possible that the child may be able to
go home to Romania for a period of time and return again after the appropriate
interval has elapsed from her first-stage reconstruction.
Progress Report: March 2002
Roxana had surgery on March 22. The leg-lengthening involves severing
the interior portion of the femur and attaching a metal stretching device
to the bone above and below the separation. Roxy's leg was also re-aligned
with correction to the hip socket, which will give her a more normal stride.
The actual stretching begins one week following surgery. The mother is responsible
to do 3x daily therapy and screw rotation to lengthen the leg 1mm per day.
What a wonderful opportunity this is for one Romanian family to have this
kind of intensive care. This is all made possible by generous donations
to Heart for Romania and Shriners' Hospital!
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The black apparatus is the stretching device. Two pins, top and bottom,
are secured to her femur. The device will be adjusted regularly to stimulate
new bone growth, which will lengthen her femur. |
Here's Roxy in the Portland Shriners' Hospital following surgery for
PFFD.
(below, left) Roxy's orthopedic surgeon, Dr. Aiona, is pictured here
doing his rounds, with coffee-cup in hand. Mom, who stayed in the room with
the child the entire stay, looks on. All those toys and presents are gifts
from visitors and the Shriners' Hospital.
(below) Here's Herb, Roxy's therapist. Though Roxy is crying, it's probably
more from fear than pain, as she settles down immediately once Herb visits
with her a bit. He's so gentle and kind everyone loves Herb! |
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Roxana's project is going to be long and expensive. Heart
for Romania has committed to guarantee support for Roxana's medical services
and treatment to completion or the age 18, whichever comes first. Although
all of The Shriners' Hospital services are free, Heart for Romania has extensive
support expenses involved in getting the family and translator here, arranging
for services, and keeping them here. If you would like to financially support
Heart for Romania 's efforts on behalf of this child, contributions may
be mailed to the address listed below. All contributions are heart-warming
and tax-deductible. Thank you for your consideration! |
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