HERE FOR MY PHOTOBLOG
name is Sohum Shah. I was born on October
26, 2002. My mamma had a normal delivery
and I scored high on my Apgars 9,10.
California has a rule of extended genetic
testing after the childs birth and
my parents gave consent for that too! And
boy did I trick them all! I passed all my
newborn, and all the genetic testing
with flying colors. Not to mention
all my prenatal tests of course! My first
four months were great! I
started to roll over from tummy to back
when I was barely one and a half
months and my granny thought he is going
to walk at a very early age! I
fooled them all again!
7 months, I was the most bright little
boy. Wanted to talk and be social and
give out my big tooth less smiles to
anyone and everyone. So when I
wasnt sitting up well,
my parents were not too concerned! Our
pediatrician referred us to the Stanford
developmental clinic and there I saw
another doctor. She said To me,
hes a little guy with a big
head. Nothing to worry, but
if you are overly concerned parents, see
a neurologist and if you are more
concerned, see a Genetic
parents were they Na´ve! They thought
they had never ever heard of any genetic
condition in their lifetime. No family
history on either side. So they tried to
make an appointment with a neurologist
but the next appointment was in 7 weeks.
In the meantime, I was going to India
with my mom and grandparents.
August 22, 2003, we saw a leading
pediatric neurologist in India and within
10 minutes, he told my mom. Sohums
brain seems fine. Lets do this
genetic spinal muscular
atrophy test. My mom was upset with
him. Why did he choose the last
test without any further examinations?
proved my mom na´ve and wrong again.
After 3 weeks, we got the results on the
email first that I had tested positive
for sma. Life has never been the same
since then! It took a u-turn for my
parents and of course for me. Its
been almost a year since we got the
diagnosis. To learn more about sma,
Cure SMA or SMA Support
went to a SMA fundraising event
yesterday, and my mom was telling me that
sma is the closest for finding a cure! We
need $34 million and we should have a
cure! My parents firmly believe that no
child should have to suffer for the want
of money for research! Please
help us raise money for research to find
a cure so that me and all my other
sma children could also run, walk, jump!
Help Us Find A CURE!
you very much for Joining us for our 3rd Annual
Walk SMART, A walk to benefit the Families of SMA, on October
1st, 2005! See
Do Check Out My Updates and My NEW PHOTOS HERE!!