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Examine your reasons for wanting to help. Look

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at your donation as an investment. It's not

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charity as much as it's an investment in

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a child's future.

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Welcome to Where Hope Begins, the Save One

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Life podcast.

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In honor of Save One Life's twenty fifth

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anniversary, this show tells the story of how

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one simple act of compassion

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grew into a global lifeline for families living

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with hemophilia and other bleeding disorders.

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What began with one question,

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could one family help another across borders, has

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become a movement built on dignity, opportunity, and

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hope. Because when one life is supported, generations

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can be transformed.

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I'm your host, Kai. And for our very

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first episode, we're starting at the very beginning

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with Save One Life's founder, Lori Kelly. Welcome

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to the podcast.

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Thank you, Kai. It's wonderful to have you.

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So I guess let's just start from the

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very beginning. You know, you've served the bleeding

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disorders community since 1989,

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and you founded Save One Life after witnessing

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devastating need firsthand.

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So what do we need to know about

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the path that brought you here? Well,

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it wasn't any one thing, really. It was

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a kind of a confluence of events.

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First, the birth of my child with hemophilia

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in 1987

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and then witnessing the pain that he had

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to suffer.

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It really opened my eyes to suffering in

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children

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in general and globally. And then in 1994,

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the Rwandan genocide had a part. I had

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a one month old baby at that time,

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my third child, and watched the news daily

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of children suffering and babies who were orphans.

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I asked my then husband if we could

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adopt, and that wasn't in the cards wisely.

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But I vowed then to do something to

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help children in developing countries.

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In 1996, I was asked by Bayer Corporation

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to develop a program

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to identify and train,

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advocate patients in developing countries.

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So I was able then to start traveling

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and seeing firsthand how people lived and the

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challenges they faced. And then finally, in 1999,

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a mom from New York of a child

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with hemophilia

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asked if we could start some kind of

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a child sponsorship program like Save the Children.

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So it was really her idea.

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And her comment made me realize that other

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people too were interested in helping kids who

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suffer in developing countries with hemophilia.

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And then it all kind of came together

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in 2000.

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It's amazing to hear. So I guess, let's

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go back to those early years. What did

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that teach you about, like, fear and advocacy

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and, like, what families actually need?

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Well, you know, again, getting out there and

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talking with American families first shows what their

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needs were. And

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at the time I started all of this,

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back in 1989,

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at that time, the hemophilia community globally was

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focused on the HIV scandal.

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Half of our US community was infected with

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HIV and Hep c.

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And then new moms like me came in

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with infants who are not HIV affected. And

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we were actually being kinda neglected, rightly so.

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The focus was on HIV affected families.

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There were many battles to be fought there

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for care and support and

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changing people's perceptions.

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So by attending support group meetings, I began

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to hear the non HIV community, people like

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me, what their needs were. Their needs were

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great because no one was really helping them.

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And so I decided to focus on what

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I knew best and what I lived, which

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was life

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with hemophilia without HIV and hep c. But

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also, we lacked resources, so I started to

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try to fill those resources.

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Part of that journey was you wrote the

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book Raising a Child with Hemophilia

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1990.

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I think one of the first parenting books

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on hemophilia. Can you tell us a little

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bit about that experience? Yeah. So, again, it

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was the attending the support groups and then

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having my own experiences, my own I I

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didn't know what I was doing when my

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child was born and went through a lot

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of

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painful episodes with him because,

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I wasn't sure what the right things to

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do were. And it was actually the other

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parents in the support group who were giving

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me really great information. But my doctors and

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my nurses, none of them even had kids.

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So

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they kinda couldn't give us, like, what to

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expect at the next stage and the next

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stage, but the other families did. So I

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started,

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contacting other families and collecting information. And

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what it turned out to be was a

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hard copy portable manual that addresses all the

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different issues of child rearing,

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such as medical aspects, insurance,

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and consumer

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aspects of hemophilia.

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At that time, you know, people were calling

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us patients, which even implies the term passivity.

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And as a business person, I had a

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business background, I wanted to call us consumers.

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And so as consumers, you have rights and

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responsibilities, and you have the right to ask

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questions, and you have the right to demand

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certain things. But you also have the responsibility

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of getting educated and

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speaking the same language as the doctors. So

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we tried to put that all into one

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book. And then changing their mindset alone on

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the idea that they were consumers also

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gives them the idea that they can be

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advocates and speak up for themselves and for

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their communities.

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And we also try to present all this

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information in very user friendly terms

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so that any parent could pick up the

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book and quickly learn

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what to do, what to ask, and how

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to prepare for the next stage in their

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child's development.

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Such important contributions to the hemophilia community, you

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know, born out of, as you kind of

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put it, that initial fear, right, and not

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knowing what to do. So you had all

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of this energy and momentum. Tell us about

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this turning point in your life as you

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were traveling abroad in these developing countries. Yeah.

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I mean, I was home in the nineteen

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nineties raising my kids and writing. I had

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a newsletter. I'm working on some children's books

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for hemophilia. But, the Bayer Corporation had approached

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me and asked if I would consider

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traveling to developing countries and identifying,

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you know, advocates there and try to help

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build their advocacy programs like we were doing

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here in The US.

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I have a master's degree in international business

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and economics, and my first passion has always

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been doing developmental work in the in

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overseas, but life had its other plans. So

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I never really got to it. But I

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was excited to actually get to do what

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my passion was, which was going to developing

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countries.

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So my first forays there, you know, I

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was given a budget for travel. And I

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went to the countries where

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there really were no programs or there was

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no access to factor, nothing happenings.

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So the first thing I had to do

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was just get out and see how do

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people live. And it was really eye opening.

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And the first thing you learn is that

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there's different kinds of poverties

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and needs, and they can differ from country

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to country and from region to region.

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And even within one country, there's different kinds

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of poverty. Like, there's urban poverty and there's

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rural poverty, and they're very different. With urban

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poverty, you get a trade off, you know,

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better access to transportation and health care,

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but you'd have to deal with slums, crowding,

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lots of noise, you know, the odors, crime.

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And then in the rural communities, it's quieter

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and even cleaner, but the trade off is

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you don't have access to health care or

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even transportation to get health care.

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So

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families living on a dollar a day typically

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only have one breadwinner

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and one who stays home with the children.

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And it might be a one room or

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two room

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shelter or house with a lot of crowding

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if it's a big family.

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I've seen parents that sleep on concrete floors

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or even dirt floors so the children can

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sleep in the beds all in one room.

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And in one bed, you might have three

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kids sleeping head to foot. There's no AC.

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There's no fans. This isn't sweltering heat. There's

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no refrigerator because there's no electricity,

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no TV, and often there's no bathroom. There

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might be a public bathroom like a porta

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potty or something for an entire community.

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Or people just go out to the fields.

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It's it's a very rustic rural way of

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living.

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And it's it's a degrading way of life

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in many ways. We wanna try to find

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a way to give them some dignity in

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their life. I mean, if a children has

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a chronic medical disorder like hemophilia, it has

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a bleed,

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and needs medical attention,

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it means that the breadwinner,

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often the father, might need to give up

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his job for the day to take the

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child to the hospital

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where they have to wait all day, and

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then the parent will lose the money for

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that day for his work. So oftentimes, they

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give up taking the child in for medical

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care because they can't afford to lose a

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day's worth of work. And that way, they

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eat, but the child suffers.

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Right. And I know there was this idea

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that it's not necessarily

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about

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providing factor or

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health care. Can you talk a little bit

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about Save One Life's mission and foundation, the

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idea of an education or, you know, groceries?

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Like, can you tell us about what sponsorship

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means and how it actually helps these families?

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Well, yeah. And, you know, as all these

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parents and their kids would come to meetings

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so we could talk to them to try

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to inspire them to advocate for themselves,

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I could just see that they needed medicine,

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first and foremost. That was their greatest need.

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And then so many of them were uneducated.

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The kids would just drop out of school

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because they missed so much school. You'd end

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up with a 15 year old who was

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still, like, in second grade. And, again, that's

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degrading for the child. Or kids that made

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it through primary schools but then couldn't go

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on to higher education because of their lack

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of mobility

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and their suffering.

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And then then you could see that they

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just needed

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money for everyday expenses, food, medicine,

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clothing.

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Transportation is huge because you have to get

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to the medical facility to take advantage of

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any kind of medical care, and some of

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them didn't even have money for that.

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So little by little, as I mentioned before,

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it's the patients that tell you what they

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need if you listen. If you go and

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see it with your own eyes, talk to

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them, listen to them, ask some questions.

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And the most important component is going into

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their homes, and no one had ever done

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that before, I found out. All the programs

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in hemophilia that existed, nobody ever went into

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the homes of the poor to see how

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they live and see what their needs were.

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The families would come to the clinic or

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they'd come to meetings. So nobody actually saw

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what their day to day life was. And

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once you go into their homes and see

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it, it becomes crystal clear what they need.

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So that's kind of all of our ideas

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came from the patients themselves.

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Yeah. And I and I guess what was

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happening inside of you in those moments? Like,

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was it was it difficult to navigate, like,

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the emotions of what you're seeing?

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No. I I raised I was raised with

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six brothers, so I'm pretty much a male

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thinker at times. So

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I don't always time on words. I don't

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always time like, I get right to the

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point. And I like to fix things. I'm

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always been a fixer. So for me, it

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was a huge challenge.

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I had no hands on experience except, going

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in there and just figuring it out. So

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I had confidence in myself that if I

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get there and see it, I'll figure something

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out. And it's very important to mention

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that none of this could take place without

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our program partners. So this is they are

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a huge component of everything.

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So So to go to a country, you

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have to have a contact and you have

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to find someone you can trust and depend

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on. And we were very, very fortunate and

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blessed to find a lot of these people

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in the countries. If you don't have that,

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then you cannot have a program. It's just

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as simple as that.

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So, again, they would help me. They would

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tell me what their needs were. And together,

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we would figure out a strategy and a

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plan and not just impose what I think

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they need but elicit from them how do

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we do this. And we see what the

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needs are. Now how do we get from

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point a to point b given that you

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live in, you know, India or Pakistan or

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somewhere in Africa? We're

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celebrating,

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you know, twenty five years of this work.

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And

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when you think about that, maybe twenty five

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years ago, what would you tell that person

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or, like, what are you most proud of?

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What I think of is gratitude more than

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pride, I guess. Because I feel that there's

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always tremendous amounts of work to be done

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still. There's thousands more children to reach. There's

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more work to be done. There's more countries

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we need to reach. So I think after

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twenty five years, what I look back on

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is mostly gratitude.

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Grateful that,

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the families trust us to help them and

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grateful to, first and foremost, the donors who

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make all this possible.

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The corporate donors, especially I'd like to call

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out Patrick

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Schmidt of Triple F Enterprises who's been with

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us from day one. He's a fantastic donor

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and supporter. You You can have all the

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money in the world and and just give

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it away, but if you don't have people

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on the ground running programs and overseeing everything,

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they have to deal with all the frustrations

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that come with living in a developing country,

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and yet they do their jobs and most

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of them are volunteers.

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Actually, all of them are volunteers. They're pretty

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impressive people.

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Amazing. And, you know, we we see firsthand

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the kind of the impact that, you know,

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this collaboration of of people has made. So,

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you know, for anybody who's listening right now

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who is interested in your organization or or

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even would want to sponsor a family, what's

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that first step they should take? The easy

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answer is go to the website and check

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out the kids that we have who are

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waiting for sponsorship,

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saveonlife.net.

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But also, you know, examine your reasons for

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wanting to help. Look at your donation as

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an investment. It's not charity

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as much as it's an investment in a

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child's future.

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So many people want help.

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Sometimes they feel I feel guilty. Wealth guilt,

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if you will. Just living in America

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for all of its issues that we have

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these days, America is still an incredible country

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that has vast resources and very good hearted

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people and trying to get them to see

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that the rest of the world is not

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so fortunate as we are. Even some of

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the most troubled people in our country are

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still so much better off than people in

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other countries.

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So we like to say that it's an

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investment in a child's future overseas, and I'd

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like people to think of it that way

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when they go and look at little faces.

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Sometimes you'll find a child whose heart speaks

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to you in various reasons. It's almost inexplicable.

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Fantastic. And I I loved I loved how

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you put it as investment, right, as as

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opposed to a a

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charity, which is just the way we should

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be thinking about, you know, everyone around us.

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Thank you so much for helping us kick

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00:13:33,950 --> 00:13:36,429
off this podcast. And, you know, we'll we'll

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be sharing many more stories from all over

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the world in the coming episodes. But thank

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you again for for being here today. Thank

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you, Kai. Absolutely. And thank you everybody for

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listening to Where Hope Begins, the Save One

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Life podcast. Because when one life is supported,

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00:13:50,024 --> 00:13:51,884
hope doesn't stop there. It begins.

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Thank you for listening to Where Hope Begins,

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00:14:02,159 --> 00:14:04,399
the Save One Life podcast because when one

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00:14:04,399 --> 00:14:07,600
life is supported, generations can be transformed. Presented

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00:14:07,600 --> 00:14:09,840
by Save One Life in partnership with Balancing

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00:14:09,840 --> 00:14:12,715
Life's Issues, produced by me, Kai. Got an

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00:14:12,715 --> 00:14:14,715
idea for the show? Send me an email

406
00:14:14,715 --> 00:14:17,615
at kai@balancinglife'sissues.com.

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00:14:17,674 --> 00:14:20,075
Did today's story move you? Sponsor a child

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00:14:20,075 --> 00:14:21,674
at save1life.net

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backslash

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00:14:22,475 --> 00:14:24,735
sponsorship. Anything else to add, Miles?