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Hello, my name is Greyson Ray Garcia here is my story.
I was born on December 6th 2013 and I have had quite the journey
already. Here are a few things about me that I find interesting.
I was born 23 inches long, my mommy says I am a big guy.
I
had a knot tied in my umbilical cord and My mommy’s midwife Lauren
said I was a lucky baby. I was nearly two weeks overdue and my mommy
had a little complications at the end of labor because I wanted to get
out so bad because I needed to use the potty really bad so I had an
accident inside my mommy’s warm tummy and they called that meconium aspiration which I got a
little in my lungs so I had to go on my very first and hopefully last
ambulance ride all the way to St. Vincents Hospital to stay in the
NICU to make me all better. I was released 2 days later and went home
with mommy and daddy.
I am a very happy little guy but when we went in for my check up
at 3 weeks and 3 days old and the very nice doctor told my mommy that
he was concerned because I have severe Hypotonia. I was then admitted to Randall
children’s hospital where they wanted to keep me for a lot of
testing. I had a lot of Doctors and Specialists observing me and I
had an MRI. The team of very nice Doctors and Specialists all came to
one conclusion which was not a good one at all and has scared my
parents but they hide that from me because they don’t want me to be
afraid. The diagnosis that the doctors told my mommy and daddy was
that they think that it is SMA, Spinal Muscular Atrophy. If you would
like to learn more about what that is read here.
The Hypotonia is just a symptom of the disease and we are
waiting for the results to come back to confirm or not. Either way my
Hypotonia is caused by something very serious and my family may need
your help and support because I might be in and out of these hospitals
although we are staying positive and making everyday count. The
Doctors told my parents that we could either stay in the hospital or
we could go home and enjoy one another. My breathing is shallow
because my muscles are not strong enough to use my diaphragm so I use
mostly my tummy to help breathe. So my parents need to make sure that
they keep an eye on that but so far my oxygen levels are good so what
ever I am doing I am doing it well enough for now. I was given a
special car-bed instead of my carseat because I can not sit up and
hold my neck at all and it was hard to breathe. I will grow out of
that carbed soon since I am so tall.
My Parents love me very much as well as all of my family. We
are living in each and every moment and not looking to the future.
The doctors told mommy and daddy that it is the quality of life not
quantity that matters, so my mommy and daddy kiss me all the time and
make me feel loved every second of everyday. My favorite place to be
in the whole world is feeding from my mommy because she said her milk
will make me very strong and she also tells me that I am a warrior
because I have already conquered so many things, with a knot tied and
meconium in my lungs. I am a trooper and regardless of how long my
life is I know it will be a good one because I am loved by so many!
My sisters Angelina who is 10 and Savana who is 8 both love me too and
they are being strong for me as well. Sometimes I catch my mommy and
daddy crying when they think I am asleep but when I open my eyes they
instantly smile because they want me to feel only love and happiness.
My family and I would appreciate any help and support we can get
because we are looking at a tough road ahead of us but we will show
strength and get through this as a family because we are one strong
united family.
Love,
Derick, Rashel, Angelina, Savana and me baby
Greyson Garcia
P.S please share my story to not only to help me but by raising
awareness to this sad disease that most of us have never even heard of
before.
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