This is Akshat and Roli born and raised in Varanasi, UP.
Roli & I were born in 1995 & 1997 respectively, back then SMA was an uncommon disease, half of the doctors, out of unawareness used to claim that weakness is bcoz of the lack of vitamin/calcium. Both of us were diagnosed for SMA in 2000.
Roli Completed her schooling from CHGS. It was a little tough schedule for her as there are a lot of things one has to consider, like ground floor classes or lift facilities etc. Our parents used to walk 4-5km daily to take her to school. Despite facing numerous difficulties she is graduate now & preparing for competitive exams.
I have Sma type 2 & I am a little weak as compared to my sister. I completed my studies at home & doesn’t matter if I went to school or not as long as I gain knowledge, but the thing that bothered me was having no friends (too bad, home tutors don’t bring other students with them 😜)how it feels when on any important day like birthday, you have no friends to celebrate with (but thanks to Jio which vanished this problem on virtual world)
Talking about dreams,
Roli wants to achieve something in her life, she wants to become writer, singer, painter, banker etc (believe me it’s a long list😂)
For me, I’m a practical person, my mantra is dream less, work more.
I dreamed of becoming an all rounder in cricket, but I know it’s impossible now, not because I won’t get cured but Hardik Pandya already took my place 😂
We want Spinraza so that Roli & I can switch to real fight from verbal fight, 😜(kidding).
We need it ASAP as the days are passing, our condition is getting worse and our parents are also getting older. I don’t know how long they can keep up with this situation but we believe in God and he must have planned something good for us.
Hopefully, our government also bring Spinraza to an affordable price like other countries did.
We dedicated our story to our parents, they are more like friends than parents, to whom we can share almost everything😘 but I know 1 thing God never gives a problem without a sol.
#smafreeindia #wearerare #fight4life #30days30stories #ordi #sos #fsma #curesma #careforsma #careforall
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