History
I was born on August 8th
1991. Two or more weeks premature. I spent the first
three and a half years of my life in a Romanian
orphanage, on the third year one of the caretakers
attempted to kill me by throwing me down the stairs for
complaining that she was stealing food. I suffered a
Traumatic Brain Injury with skull fracture. I remember
waking up in the hospital. Because of the premature
birth and traumatic brain injury I am severely multiply
disabled. I was transferred to a hospital in Bucharest
for six months, after which I was transferred to an
orphanage in Transylvanian Alps. There, I would stay
until my adoptive parents brought me to America, to the
Northwest suburbs of Illinois.
I came to America when I was approximately four years
old. I had severe strabismus, and was only able to see
from one eye, my adoptive parents took me to Dr.
Middleman, one of the best Pediatric eye surgeons in
the state of Illinois. It took three weeks for my eyes
to heal, after which I started to learn to speak
English.
My Mom and Dad introduced me to a loving family.
Suddenly I had two grandmothers, five Uncles, five
Aunts, nieces and nephews and family I had never
dreamed of before. Everyone wanted to get to know me
and love me. It was a special gift coming to America; I
would have died at an early age in Romania.
I started school, right away in September of that year
I arrived, I went to a special program called ECDEC
which stands for Early Childhood Developmental
Enrichment Center, this special center allowed me to
learn and adjust to the english language.
When grade school started my parents found out I had
some sort of disability preventing me from learning
normally. they put me in special education classes and
it seemed to fix things for a while. As time went on my
parents took me to Advocate Lutheran General Hospital's
Yacktman Center for Pediatrics. We went to Dr. Nishawn
Shaw of the Pediatric Neurology team who diagnosed me
with PDD-NOS which is esentially Autism-Not Otherwise
Specified. My Mom and Dad then worked with the school
and the school district to get an IEP (Individual
Education Program) for me. Now my parents and the
school district would have regular meetings to discuss
progress and needs of my education.
I excelled in the computer classes, I found computer
programs and electronics to my special gift.
In sixth grade and discovered the stock market, I was
intrigued by the buying and selling of stocks. I found
learning programs on the internet to teach me about
strategies in buying and selling, suddenly I wanted to
change all my dreams from being a doctor to being a
stock broker and investment tycoon. After a few months
I discovered Options, Futures, Forex, Commodities,
Bonds and other investment instruments. Over the next
six years I would become a genius of investments.
Immediately after graduating eigth grade the high
school got me a work permit and I started working at a
computer rental company where my mother worked as a
sales representative. I worked as an I.T technician
repairing and preparing computers and equipment for
rental. I am knowledgeable in computer hardware and I
became the youngest I.T technician in the company. I
knew more than most of the technicians that worked
there. There was was a server there which none of the
other technicians could get repaired and running, and
after four hours the owner of the company told me to
try to fix it. In under 30 minutes I had it fixed and
running. I am a sponge with information. I research
things and find out how things work and think about how
to make them work for me. By the end of the summer, I
found it progressively difficult to lift things, that I
were lifting just two months earlier, something was
wrong with my body.
Freshman year in high school was miserable for me. I
fell walking in the woods and dislocated my knee cap,
after physical therapy and rehab, I discovered my
muscles in my legs hurt all the time. I had pain in my
spine and it seemed there was something wrong. Some
days my legs hurt so bad I didn't want to leave the
house.
December of 2006 I my appetite was diminishing, I began
losing weight rapidly, early February 2007 I weighed 97
pounds.
My parents took me to doctors, they took MRI's, X-Rays
and other tests, but didn't find a cause. I was in pain
all the time but I was told that things would get
better with vitamins and exercise.
My worsening condition forced us to completely pull me
out of high school in March of 2007. I was put onto
permanent medical leave until further notice.
In April we scheduled an emergency neurological
assessment since my condition seemed to be getting
worse, and I began having seizures, The neurologist
scheduled us for a 24 hour ambulatory EEG where we
brought the equipment home, and it was taking an EEG
for 24 hours straight along with video at night, when
the doctor saw the EEG result he was unable to make a
diagnosis aside from seizures not otherwise specified.
We waited another month and then went downtown to UIC
to another neurologist, who made another inconclusive
diagnosis.
My case had become so complex that we were forced to
find a new pediatrician to organize with Children's
Memorial Hospital. Dr. Corrie A. Harris, we saw her for
the first time and she took a baseline evaluation. Two
weeks after the baseline I had an upper respiratory
infection, she took a look at me and said, “Oh no, you
need to go to the hospital now!” She called Children's
Memorial Hospital Chicago and initiated a direct to
floor admission process. Later that day we saw the
neurologist who noticed I have severe kyphosis and
scoliosis and sent me down for a series of spinal
X-Rays which revealed that my kyphosis was at 80
degrees and my scoliosis was at 14 degrees. In
February, my kyphosis was 40 degrees, and my scoliosis
was 1 degree. The neurologist also did a standard
neurological exam revealing several major neurological
issues.
This prompted other tests. I was supposed to sleep
until midnight and then stay up for 15 minute EEG
recording, the EEG recording did not show any useful
data to the doctors. After the EEG recording I was
taken to audiology for testing which revealed hearing
loss at 8000 Hz. Later I would have a blood drawing and
urine sample taken. Both of which would yield results
signaling neuromuscular disease.
The neurologist came in the room with a diagnosis, the
diagnosis was neuromuscular degenerative disease NOS.
She sent me down to get neck X-rays before I was
discharged, they were taken on a 2 week old digital
X-ray machine; the result came back as cervical
instability, which put simply means that my spine in my
neck is not stable and is much more vulnerable.
So we came home, I felt very weak and my muscles in my
legs hurt and it was very hard to walk, this is where
my Mom ordered a wheel chair for me to get around. The
school was furious and thought I was a faker. That
there was no way a kid could deteriorate so fast.
People suddenly thought I needed mental help.
A four hour IEP conference, between the district (about
15 teachers and the doctor of psychology and a physical
therapist) The school thought that with attending the
school and physical therapy would get me back to
normal. This was so upsetting to my parents, they cried
for help. The doctor bills piled up, hospital bills,
and medications. Why would I fake something like this.
I know I was talking about a powerchair and about
getting around much easier and having the back of the
chair molded to my back to stop the progression of the
spine, but maybe I was obsessed with wanting to live
and not wanting the pain anymore. It seemed me, my Mom
and my Dad where on a island without help.
The news came that a powerchair would come in late
January 2008. My Dad had to make the house accessible
for a powerchair. A ramp would have to be built,
furniture moved, and the house had to accommodate for
me. My Dad built the Ramp in January in the dead of
winter, outside in northern Illinois. (I love that
man.) We also needed a vehicle to get around in with
the powerchair. My Dad was picking me up and carrying
me everywhere and I felt sorry for him. My Dad is a big
guy, but there is no way for him to carry a four
hundred pound powerchair. We found a great van with a
lift already in it, my Dad sold his pick-up truck to
get just barely enough money to buy it, and modified it
to fit my needs.
My Mom took me back to my original Pediatrician and
there they took me through more tests. A muscle biopsy
was needed to check for diseases, but doctors were
afraid that I would not recover from surgery because of
my weakened condition. A g-tube was ordered and surgery
was marked for February 29th 2008. Advocate Lutheran
General Children's Hospital in Des Plaines, where the
surgery took place I felt that maybe a diagnosis would
be made other than neuromuscular degenerative disease
NOS. The treatment I received was superior to
Children's Memorial Hospital in Chicago. The Doctors
and nurses provided me with the best recovery. I met
other specialists, they explained that with continuing
tests they could possibly narrow the search for what
this is. They ran a muscle biopsy from my abdominal
muscles, which came back inconclusive. They would need
to take another biopsy in the future.
We asked the school if we could do alternative
schooling such as internet high school. They protested
and denied our request, they told us that they had
children in there schools that had months to live and
were dying, why couldn't our child go to school. My
parents talked an advocate to fight for me. The school
had given me a permanent medical leave. All I wanted
was for the pain to stop, why can't they understand
that.
In May 2008, we were at emergency at Northwest
Community Hospital, I began having a burning feeling
when urinating. They took CAT scans, and x-rays
Pediatric and thought I had a kidney stone, but
released me because they couldn't diagnose anything,
but told me to go to a pediatric urologist, the
earliest appointment would be 10 days later. By the
weekend I was puking up everything. We called Doctor
Norman Segal and we were told to go to Advocate
Children's Hospital In Des Plaines, IL for fluids. I
was admitted after and entire day in the Emergency
Room. They would run farther tests, to no avail they
could not find the cause of what was happening to me.
It wasn't until we went to the pediatric urologist and
they read the x-rays and showed my bowel impacted and
pressing on my bladder. After 3 days of suppositories I
started to feel better. But it continued to burn
intermittantly when i urinated. We continue to suspect
that there is something else wrong that they are not
seeing. Why can't these doctors find out what is going
on!!! WHY???

