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This
is Amanda's Story
Amanda Stewart
was normal, healthy, happy 8 year old little
girl, who spent her days going to school and
teasing and playing with her siblings: her identical
twin sister and ten year old brother. All this
changed in April of 2002. On April 1st, after
the family's bout with the flu, Amanda had Nephrotic
Syndrome and through a biopsy was diagnosed with
Minimal Change Disease. No one really knows what
causes this condition or how people contract
it, but they typically respond to standard steroid
therapy to put it into remission. Amanda did
not prove to be typical.
Amanda not
only did not respond to oral steroids, she was
resistant to IV steroids, and highly sensitive
to the toxicity. In May 2002, Amanda began experiencing
seizure symptoms of dizziness and vision problems.
These symptoms were not initially recognized
and soon progressed to full blown seizures and
swelling on her brain. Amanda was care-flighted
a second time to Packard Children's Hospital
at Stanford University with her mom, Tracey.
Her two siblings stayed behind with their grandparents.
Over the next several months Amanda was treated
with highly toxic medications (in laymen's terms: "they
threw the kitchen sink at her"). She spent
every other week in the hospital for pain management
and the attempts to stabilize her until she would
go into remission. Remission never occurred.
By October
2002, seven months after the initial diagnosis,
Amanda's disease became life threatening and
she was constantly in pain. As a result, it became
necessary to remove both of her kidneys - both
of her kidneys were found to be very scarred
with Focal Segmental Glomerulosclerosis (FSGS)
. A child's kidneys are usually 4 to 5 cm, and
would be removed from two small incisions made
in the lower back. Amanda's by this time were
now 12 cm each. In order to perform the procedure
safely, it became necessary to make an incision
from the bottom of her rib cage to below her
belly button for the removal of both kidneys.
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