Examine your reasons for wanting to help. Look
at your donation as an investment. It's not
charity as much as it's an investment in
a child's future.
Welcome to Where Hope Begins, the Save One
Life podcast.
In honor of Save One Life's twenty fifth
anniversary, this show tells the story of how
one simple act of compassion
grew into a global lifeline for families living
with hemophilia and other bleeding disorders.
What began with one question,
could one family help another across borders, has
become a movement built on dignity, opportunity, and
hope. Because when one life is supported, generations
can be transformed.
I'm your host, Kai. And for our very
first episode, we're starting at the very beginning
with Save One Life's founder, Lori Kelly. Welcome
to the podcast.
Thank you, Kai. It's wonderful to have you.
So I guess let's just start from the
very beginning. You know, you've served the bleeding
disorders community since 1989,
and you founded Save One Life after witnessing
devastating need firsthand.
So what do we need to know about
the path that brought you here? Well,
it wasn't any one thing, really. It was
a kind of a confluence of events.
First, the birth of my child with hemophilia
in 1987
and then witnessing the pain that he had
to suffer.
It really opened my eyes to suffering in
children
in general and globally. And then in 1994,
the Rwandan genocide had a part. I had
a one month old baby at that time,
my third child, and watched the news daily
of children suffering and babies who were orphans.
I asked my then husband if we could
adopt, and that wasn't in the cards wisely.
But I vowed then to do something to
help children in developing countries.
In 1996, I was asked by Bayer Corporation
to develop a program
to identify and train,
advocate patients in developing countries.
So I was able then to start traveling
and seeing firsthand how people lived and the
challenges they faced. And then finally, in 1999,
a mom from New York of a child
with hemophilia
asked if we could start some kind of
a child sponsorship program like Save the Children.
So it was really her idea.
And her comment made me realize that other
people too were interested in helping kids who
suffer in developing countries with hemophilia.
And then it all kind of came together
in 2000.
It's amazing to hear. So I guess, let's
go back to those early years. What did
that teach you about, like, fear and advocacy
and, like, what families actually need?
Well, you know, again, getting out there and
talking with American families first shows what their
needs were. And
at the time I started all of this,
back in 1989,
at that time, the hemophilia community globally was
focused on the HIV scandal.
Half of our US community was infected with
HIV and Hep c.
And then new moms like me came in
with infants who are not HIV affected. And
we were actually being kinda neglected, rightly so.
The focus was on HIV affected families.
There were many battles to be fought there
for care and support and
changing people's perceptions.
So by attending support group meetings, I began
to hear the non HIV community, people like
me, what their needs were. Their needs were
great because no one was really helping them.
And so I decided to focus on what
I knew best and what I lived, which
was life
with hemophilia without HIV and hep c. But
also, we lacked resources, so I started to
try to fill those resources.
Part of that journey was you wrote the
book Raising a Child with Hemophilia
1990.
I think one of the first parenting books
on hemophilia. Can you tell us a little
bit about that experience? Yeah. So, again, it
was the attending the support groups and then
having my own experiences, my own I I
didn't know what I was doing when my
child was born and went through a lot
of
painful episodes with him because,
I wasn't sure what the right things to
do were. And it was actually the other
parents in the support group who were giving
me really great information. But my doctors and
my nurses, none of them even had kids.
So
they kinda couldn't give us, like, what to
expect at the next stage and the next
stage, but the other families did. So I
started,
contacting other families and collecting information. And
what it turned out to be was a
hard copy portable manual that addresses all the
different issues of child rearing,
such as medical aspects, insurance,
and consumer
aspects of hemophilia.
At that time, you know, people were calling
us patients, which even implies the term passivity.
And as a business person, I had a
business background, I wanted to call us consumers.
And so as consumers, you have rights and
responsibilities, and you have the right to ask
questions, and you have the right to demand
certain things. But you also have the responsibility
of getting educated and
speaking the same language as the doctors. So
we tried to put that all into one
book. And then changing their mindset alone on
the idea that they were consumers also
gives them the idea that they can be
advocates and speak up for themselves and for
their communities.
And we also try to present all this
information in very user friendly terms
so that any parent could pick up the
book and quickly learn
what to do, what to ask, and how
to prepare for the next stage in their
child's development.
Such important contributions to the hemophilia community, you
know, born out of, as you kind of
put it, that initial fear, right, and not
knowing what to do. So you had all
of this energy and momentum. Tell us about
this turning point in your life as you
were traveling abroad in these developing countries. Yeah.
I mean, I was home in the nineteen
nineties raising my kids and writing. I had
a newsletter. I'm working on some children's books
for hemophilia. But, the Bayer Corporation had approached
me and asked if I would consider
traveling to developing countries and identifying,
you know, advocates there and try to help
build their advocacy programs like we were doing
here in The US.
I have a master's degree in international business
and economics, and my first passion has always
been doing developmental work in the in
overseas, but life had its other plans. So
I never really got to it. But I
was excited to actually get to do what
my passion was, which was going to developing
countries.
So my first forays there, you know, I
was given a budget for travel. And I
went to the countries where
there really were no programs or there was
no access to factor, nothing happenings.
So the first thing I had to do
was just get out and see how do
people live. And it was really eye opening.
And the first thing you learn is that
there's different kinds of poverties
and needs, and they can differ from country
to country and from region to region.
And even within one country, there's different kinds
of poverty. Like, there's urban poverty and there's
rural poverty, and they're very different. With urban
poverty, you get a trade off, you know,
better access to transportation and health care,
but you'd have to deal with slums, crowding,
lots of noise, you know, the odors, crime.
And then in the rural communities, it's quieter
and even cleaner, but the trade off is
you don't have access to health care or
even transportation to get health care.
So
families living on a dollar a day typically
only have one breadwinner
and one who stays home with the children.
And it might be a one room or
two room
shelter or house with a lot of crowding
if it's a big family.
I've seen parents that sleep on concrete floors
or even dirt floors so the children can
sleep in the beds all in one room.
And in one bed, you might have three
kids sleeping head to foot. There's no AC.
There's no fans. This isn't sweltering heat. There's
no refrigerator because there's no electricity,
no TV, and often there's no bathroom. There
might be a public bathroom like a porta
potty or something for an entire community.
Or people just go out to the fields.
It's it's a very rustic rural way of
living.
And it's it's a degrading way of life
in many ways. We wanna try to find
a way to give them some dignity in
their life. I mean, if a children has
a chronic medical disorder like hemophilia, it has
a bleed,
and needs medical attention,
it means that the breadwinner,
often the father, might need to give up
his job for the day to take the
child to the hospital
where they have to wait all day, and
then the parent will lose the money for
that day for his work. So oftentimes, they
give up taking the child in for medical
care because they can't afford to lose a
day's worth of work. And that way, they
eat, but the child suffers.
Right. And I know there was this idea
that it's not necessarily
about
providing factor or
health care. Can you talk a little bit
about Save One Life's mission and foundation, the
idea of an education or, you know, groceries?
Like, can you tell us about what sponsorship
means and how it actually helps these families?
Well, yeah. And, you know, as all these
parents and their kids would come to meetings
so we could talk to them to try
to inspire them to advocate for themselves,
I could just see that they needed medicine,
first and foremost. That was their greatest need.
And then so many of them were uneducated.
The kids would just drop out of school
because they missed so much school. You'd end
up with a 15 year old who was
still, like, in second grade. And, again, that's
degrading for the child. Or kids that made
it through primary schools but then couldn't go
on to higher education because of their lack
of mobility
and their suffering.
And then then you could see that they
just needed
money for everyday expenses, food, medicine,
clothing.
Transportation is huge because you have to get
to the medical facility to take advantage of
any kind of medical care, and some of
them didn't even have money for that.
So little by little, as I mentioned before,
it's the patients that tell you what they
need if you listen. If you go and
see it with your own eyes, talk to
them, listen to them, ask some questions.
And the most important component is going into
their homes, and no one had ever done
that before, I found out. All the programs
in hemophilia that existed, nobody ever went into
the homes of the poor to see how
they live and see what their needs were.
The families would come to the clinic or
they'd come to meetings. So nobody actually saw
what their day to day life was. And
once you go into their homes and see
it, it becomes crystal clear what they need.
So that's kind of all of our ideas
came from the patients themselves.
Yeah. And I and I guess what was
happening inside of you in those moments? Like,
was it was it difficult to navigate, like,
the emotions of what you're seeing?
No. I I raised I was raised with
six brothers, so I'm pretty much a male
thinker at times. So
I don't always time on words. I don't
always time like, I get right to the
point. And I like to fix things. I'm
always been a fixer. So for me, it
was a huge challenge.
I had no hands on experience except, going
in there and just figuring it out. So
I had confidence in myself that if I
get there and see it, I'll figure something
out. And it's very important to mention
that none of this could take place without
our program partners. So this is they are
a huge component of everything.
So So to go to a country, you
have to have a contact and you have
to find someone you can trust and depend
on. And we were very, very fortunate and
blessed to find a lot of these people
in the countries. If you don't have that,
then you cannot have a program. It's just
as simple as that.
So, again, they would help me. They would
tell me what their needs were. And together,
we would figure out a strategy and a
plan and not just impose what I think
they need but elicit from them how do
we do this. And we see what the
needs are. Now how do we get from
point a to point b given that you
live in, you know, India or Pakistan or
somewhere in Africa? We're
celebrating,
you know, twenty five years of this work.
And
when you think about that, maybe twenty five
years ago, what would you tell that person
or, like, what are you most proud of?
What I think of is gratitude more than
pride, I guess. Because I feel that there's
always tremendous amounts of work to be done
still. There's thousands more children to reach. There's
more work to be done. There's more countries
we need to reach. So I think after
twenty five years, what I look back on
is mostly gratitude.
Grateful that,
the families trust us to help them and
grateful to, first and foremost, the donors who
make all this possible.
The corporate donors, especially I'd like to call
out Patrick
Schmidt of Triple F Enterprises who's been with
us from day one. He's a fantastic donor
and supporter. You You can have all the
money in the world and and just give
it away, but if you don't have people
on the ground running programs and overseeing everything,
they have to deal with all the frustrations
that come with living in a developing country,
and yet they do their jobs and most
of them are volunteers.
Actually, all of them are volunteers. They're pretty
impressive people.
Amazing. And, you know, we we see firsthand
the kind of the impact that, you know,
this collaboration of of people has made. So,
you know, for anybody who's listening right now
who is interested in your organization or or
even would want to sponsor a family, what's
that first step they should take? The easy
answer is go to the website and check
out the kids that we have who are
waiting for sponsorship,
saveonlife.net.
But also, you know, examine your reasons for
wanting to help. Look at your donation as
an investment. It's not charity
as much as it's an investment in a
child's future.
So many people want help.
Sometimes they feel I feel guilty. Wealth guilt,
if you will. Just living in America
for all of its issues that we have
these days, America is still an incredible country
that has vast resources and very good hearted
people and trying to get them to see
that the rest of the world is not
so fortunate as we are. Even some of
the most troubled people in our country are
still so much better off than people in
other countries.
So we like to say that it's an
investment in a child's future overseas, and I'd
like people to think of it that way
when they go and look at little faces.
Sometimes you'll find a child whose heart speaks
to you in various reasons. It's almost inexplicable.
Fantastic. And I I loved I loved how
you put it as investment, right, as as
opposed to a a
charity, which is just the way we should
be thinking about, you know, everyone around us.
Thank you so much for helping us kick
off this podcast. And, you know, we'll we'll
be sharing many more stories from all over
the world in the coming episodes. But thank
you again for for being here today. Thank
you, Kai. Absolutely. And thank you everybody for
listening to Where Hope Begins, the Save One
Life podcast. Because when one life is supported,
hope doesn't stop there. It begins.
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?