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son raghav
uh he's now two and a half years old uh
when he was born back in 2018
um we knew something was wrong with him
uh he was not able to feed normally like
other kids
so within 24 hours we had a pediatrician
walk into our office and say
that something was wrong with him but
they didn't really know what it was
they just said this is going to affect
your son for the entirety of life of his
life
and we have to figure out what it is so
our world just
shook you know my husband and i we held
our hands
um we just didn't know how to process it
we were ready for
you know sleepless nights and changing
diapers but this was not something that
we expected
so that was a life changing moment for
us
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and we were told that there was no cure
for this disease
so it was entirely on our family to try
and figure out what was going on
so my husband and i we put together a
team of researchers
a team of scientists who could find a
cure for raga
and that's the path that we've been on
for the past one and a half years
we are pursuing gene therapy as a way to
you know help raghav lead a better
quality of life
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so with this amazing support support
system and this
you know unfailing love that we have
here
um you know we get the hope and the
motivation to
find a cure for raga and achieve
anything that's ahead of us
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you know we spent a lot of time being
upset and depressed but it was not doing
any good so it's very easy to get into
that loop of being
sad and not doing anything so even if
it's harder i think it's important to
put one foot in front of the other
just be very happy for what we have
today and
keep going on it so i keep telling that
to myself
um and second i try and serve the
community as much as possible
be it homelessness b is education or
whatever that is i try and give back to
the community
just injecting some positivity into the
world
with the hope that it would be returned
back to me uh
so i i that's been just very therapeutic
for me i
highly recommend that for anyone who's
going through you know tough situations
in life
