Welcome to where hope begins, the Save One
Life podcast. I'm your host Kai, and today
we're joined by Usha Parthasarathy,
Save One Life's India program coordinator.
Usha has spent decades strengthening hemophilia
care and community acceptance in India, and she's
known for something rare, deep compassion with clear
high expectations
because she wants every child to have not
just support, but a future. Welcome to the
podcast, Usha. It's an honor to have you
here.
Thank you so much, Kai. I truly
appreciate
this,
and I hope,
I deliver
the message what I have in mind in
my mind clearly.
Thank you once again.
Of course. Well, you know, speaking of that
message, let's just start with your connection to
hemophilia because I know it's deeply personal. Can
you tell us about that?
Honestly, I didn't know anything much about hemophilia
until I gave birth to my first son
in 1977,
though my father was a hemophilic.
All I knew, like,
he had
pain,
not even I I never realized it was
bleeding.
All I all I felt
that
he had pain in his knee, his ankle,
his shoulder,
almost everywhere.
And he used to suffer,
a lot.
And,
there was not even
a whole blood transfusion
those days.
It was only given when it is external
bleeds, not for the internal bleeds.
But then,
the man with the grit to live,
and he lived
well too. And, he will just bounce back
once the bleeding,
stops.
So I honestly didn't know anything about it.
But when I
was told
about my first son, to be honest, I
didn't even
feel bad about it because I thought here
is a man living well and, you know,
supporting all of us. Not one or two,
five daughters and two sons are a big
family.
So I thought, okay. I can manage this.
I had no fear at all.
But then
the bleeds did scare me. And then when
I started learning about it, well, I was
scared.
But then
losing
my child in an icy bleed, I couldn't
take it.
And,
in
1980,
when I lost my father in an an
another IC bleed,
that was the huge setback
in my life.
So it was the loss of both your
father and your son? Yes. It was in
a year's gap.
I guess, at that time, you know, what
what was it that you feel like your
family needed most, you know, in the kind
of early days of of your son's diagnosis?
I didn't know anything then.
I just needed the strength to withstand that
because I was very young. Sure. And I
I'm sure you felt alone. So I you
know, maybe maybe it was the idea of,
like, maybe community,
others, families who had hemophilia or or organizations
that were there to help.
Do you feel like maybe that was part
of what you may have needed at that
time? That was the time I needed the
support.
That was the time I wanted to know
who else is undergoing this,
and how am I going to cope with
this because I thought,
I won't be able to cope without my
father. I don't know why I felt that
at that time.
And,
I needed
support from the,
families.
I needed people to understand,
and I needed
more information,
knowledge.
And, I should say that
my husband
was a pillar of
support.
Mhmm.
My strength,
my emotional support, and I can go on
and go on.
Yeah. So Yeah.
When I was struggling with emotions, when I
was struggling with
everything,
he was the one who said,
we will look out for help.
You know? We can. Yeah. While while getting
help from others, we can help many.
Actually, he sowed that seed. You know? When
I got the second child, I didn't want
to lose him again.
So that was when I wanted all the
support.
Tell us about the work leading up to
the Hemophilia
Federation India.
I heard about HFI
through my treating physician,
but then I didn't know how to reach,
because I mean, that that was the time
we had no,
no social media. Nothing.
Mhmm. So
I reached out to a friend of mine
in Delhi, and then,
subsequently, we came to know about mister Ashokarma,
again, my mentor
with from whom I learned a lot.
And,
you know, when I reached out to him,
he though HFI has started,
nothing,
nothing was happening. Nothing
they were also struggling to come up.
So that was the time I thought, okay.
Though they are in Delhi, it was,
those days, it was far off. By train,
it is two days and, things like that,
and it's not that easy to connect with.
So then I thought it's okay. I mean,
there is somebody there with whom I can
travel, with
I can learn,
can I can, save my child?
You know? All that feeling was there then
when I met him. That was about,
1985.
So this was work that took place in
the early to late eighties, through the nineties,
and even the early two thousands, and then
you were connected to Save One Life.
So tell us about how that came about.
Well, actually, Save One Life started with India
in, 2001.
Yeah. You were the first first program coordinator
for Save One Life.
Yes. Yes. India was the first,
program partners.
And with,
40 beneficiaries, we started.
And then, of course, the rest rest of
the country slowly started, so they joined us.
But then it was initially
India. Seven Life was working
through Hemophilia Federation.
I left the board
of,
HFI
in 2006.
And then
I I,
I was not doing anything for a year.
I was busy in my personal work. The
it was, one of the meetings
what I attended,
where I met Laurie and these executive committee
members.
We were,
you know, like, we were wondering things were
not moving the way it should move in
India. So,
we were contemplating how to go about it.
And, I should say, it was Sudha Chandrasekaran
pulled me in. She said, you will be
able to handle it.
And that is how I came in as
an Indian
program coordinator.
Wow. So, I guess tell us tell our
listeners who are, you know, meeting and hearing
you for the first time, like, how would
you describe your role as the India program
coordinator for Save One Life? I connect
the program partners with Save One Life,
assess their ability to run the project effectively
and their ability to go
to give us
a report on time, etcetera.
And,
I felt Save one Life can make
difference
in many, many poor,
needy lives.
I walk
program partners through the program, make them understand
how to prepare the report and
how to keep in touch with the awards
and things like that. This is what I
primarily do. Got it. Thank you so much
for sharing that, and it it's such important
work. And and I know that you put
an emphasis on visiting families in their homes
to look, you know, to look beyond just
their health. So can you tell us about
the importance of that? Well, I honestly
feel, Kai,
that unless until
you visit them
in your in their place,
you won't be able to understand their living
condition and,
how far they live from the HDCs and
and, what is the condition of the mother
there. She's the primary
caregiver. And the situation
at home living with hemophilia,
all that matters a lot. You are
giving them
a confidence saying there is somebody visiting me
and that they are going to do something
about my life. They are going to change
my my child's life. That gives me lot
of happiness. I think,
such joy
cannot be explained.
That has to be felt. I always tell
them, I am a mother. I'm not a
coordinator here. I'm a mother of a hemophilic
adult boy.
So that gives them confidence. So it sounds
like that that personal story that you're able
to bring into the home
gives these families confidence, which, you know, seems
like such a small but important part of
of the work you do. I guess in
your experience, what what do you feel has
made the biggest difference in a family or
child's life,
as you as you enter these homes? There
are many, many, many kids whose life
has changed
through saving life. And, once the boy gets
a sponsorship,
the mother is the first person to be
happy because
she is not going to the family member
for money to take the boy to the
HTC.
She has money in her hand to play
her son whenever he is in need of
it.
Right?
That gives them enormous amount of strength.
Right. And and I think to your point,
it's not necessarily money for the treatment. It's
money to get transportation
to the HTC or
for a nutritious a nutritious meal that week
or help help in school. Right? Because Save
One Life's mission is more than just medical
treatment. It's how do you enrich the life
of the family and the child.
Yes.
I mean,
it's it
it it actually covers,
quite a bit. Like, some people use it
for their,
school fees.
For very poor, use it for livelihood, and,
some it it helps in,
like you said, transportation, not only to the
HTC,
even to school,
it helps.
So there are
there are many ways the sponsorship
can contribute
to the children. Sure. And I and I
think also going back to maybe we talked
about a little earlier is that when you
were first navigating this as a young mother,
there was no community for you to
tap into or or that help that you
desperately needed that time. And and now here
you are on the other side of that
giving these families maybe what you had needed
at that time. Yes. More than the monetary
support,
simply because I'm he I have gone there
to hear their stories. Right? Mhmm.
So I listen to them. And I simply
tell them,
I am with you because
I have a son who's an adult and
who's married,
who has children.
So
your child has a fantastic future.
So you don't worry about it. I listen
to them
primarily.
Yeah. And, you know, and and speaking of
stories, can you
share a story of a child or family
who was sponsored early on and maybe what
their life looks like today as a result
of that help?
There are many
kind. Oh, I know there are many. Is
there just one kinda come to the top?
Or
Well, the toppers are also many, by the
way.
That's a good thing, I suppose.
Yes. Excellent.
Excellent. I'm very proud. Well, I would say
we started with sponsorship. Right? And then we
started
educational scholarship.
That has made a lot of difference
in their life.
Like, once they finish their school,
the educational
scholarship help them study further. And we are
seeing many children in medical school, and there
are lot of engineers,
chartered accountants, and,
technicians.
You know, it all depends on your ability.
And,
they made use of the scholarship in such
a way, I would proudly say, some of
them are giving back to the society now.
So,
I can't just go and say one story
because if that boy listens to this, he'll
say you didn't talk about me. So
Fair enough. Fair enough. I would say across
India, I have many such brilliant boys.
From well, not a bit of exaggeration from
rats to riches.
So
we have many
like that.
Well, that that's about as good of an
answer as I could have,
gotten from you. And I think for any
any families who are listening, do you have
a message of hope that you could share
with the listeners with the work you do?
Like, what what makes you get out of
bed
every day to,
help these families in need? Like, we have
come a long way.
If we can change
so many lives
like this, this is what gives me my
my gives me great pleasure and, a hope
that things will improve, things will change for
the boys, and things will change for the
family,
things will change for the mothers. For someone
who's listening who wants to help, what's the
most meaningful
thing that they can do today?
I would say spread awareness about Save One
Life, which is very, very important.
I would I would request them to do
that.
And then
I would also invite them to contribute
to make difference
in a child's future.
So that is the message I would say
to people.
Fantastic. Well, Usha,
thank you so much for being here today.
Your story reminds us that, you know, real
change doesn't happen from a distance. It happens
in homes through relationships and through sharing stories.
Thank you so much for the work that
you do and continue to do and have
done,
in in helping never let a child be
forgotten.
So thank you so much for being here
today.
Well, thank you, Kai,
for inviting me to this.
I think I have,
delivered the message
properly.
Oh, you you absolutely have.
Okay. Thank you. And thanks
to Save One Life. I keep telling them
always that
they have given
a fullness
in my life.
And thank you, Save One Life. God bless.
To learn more about Save One Life and
how sponsorship transforms lives, visit save1life.net
forward /sponsorship.
And this has been Where Hope Begins, the
Save One Life podcast, one country, one community,
and one life at a time. Until next
time, everybody. Take care.
Thank you for listening to Where Hope Begins,
the Save One Life podcast because when one
life is supported,
generations can be transformed. Presented by Save One
Life in partnership with Balancing Life's Issues, produced
by me, Kai. Got an idea for the
show? Send me an email at kai@balancinglife'sissues.com.
Did today's story move you? Sponsor a child
at save1life.net
backslash sponsorship. Anything else to add, Miles?