| Meet
Corrine Sweet. We call her Rinney. She was born June 11,
2007. She was the perfect bundle of joy that all babies
are. When she was two months old, Mamaw (my mother) and I noticed
that she was not tracking at all. When I asked her pediatrician
about it, I was told not to worry about it. She would
start tracking by the time she was six months old.
One
cold day in November, Rinney was playing with her toys.
She was five months old. I looked down and she had turned
blue. She was not breathing. We rode in an ambulance
to the hospital but were dismissed with instructions
to keep an eye on her.
I
got tired of waiting for her to start tracking so I
made an appointment to see an ophthalmologist. He told
us that her optic nerves were too small. At the time,
I had no idea what he meant. Were they too small around?
Were they too short and didn’t reach her brain?
What made them too small? He referred us to Children’s
Hospital in Seattle, but the wait to get into Ophthalmology
was 4-5 months.
On
November 21, Rinney stopped breathing as Mamaw and I
were going to the store. Once again, we rode in an ambulance
to the hospital. They admitted us for four days (over
Thanksgiving!). This was the first time that I heard
the terms Optic Nerve Hypoplasia (ONH) and Septo Optic Dysplasia (SOD),
words that have now become part of my daily life. They
again referred us to Children’s, this time with
an urgent status.
On
November 29, Rinney had her first MRI. It confirmed the diagnosis of
SOD. Her optic nerves are underdeveloped as are her hypothalamus and
pituitary glands. Her Corpus Collosum (the white matter in the brain)
is thin and she has arachnoid cysts on her brain. Her doctors
tell me that she is completely blind, with a slight possibility of
fleeting light perception. She has almost daily seizures which
are mostly controlled by anticonvulsion medicine. On a good note,
I have been told that she is most likely NOT mentally retarded.
When
she was diagnosed, we were told there was no way her
vision would ever improve and there was nothing we could
do. We would have to teach her everything as she cannot
see us to mimic. She has multiple therapists that have
helped her learn to do everything from playing with
toys to crawling, cruising, and walking to eating. We
have already started introducing Braille as the success
rate even among the blind population is low.
Then
my whole world was turned upside down again when I found
out about Beike Biotech and Stem Cells China. This is
a program that utilizes umbilical stem cells to build
optic nerves for children with ONH/SOD. In effect, this
is a cure. We will end up spending one month in China
while Rinney receives multiple transfusions. For this,
we must raise $100,000.
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