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My 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 child’s 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!

At 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 wasn’t 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, he’s 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 specialist. 

My 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. 

On August 22, 2003, we saw a leading pediatric neurologist in India and within 10 minutes, he told my mom. Sohum’s brain seems fine. Let’s do this genetic “spinal muscular atrophy” test. My mom was upset with him. Why did he choose the last  test without any further examinations?

I 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. It’s been almost a year since we got the diagnosis. To learn more about sma, please visit:

Cure SMA or SMA Support

 I 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!

Thank 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 SMA NorCal Website for details!


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