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What Would You Sacrifice to Save Your Child? · Groove with Portia

0:06
Speaker 1: Welcome to Guru Portia, the podcast that uncovers the hidden
0:09
Speaker 1: treasures within grief. I'm your host, Portia, the producer, and
0:13
Speaker 1: I'm inviting you to join me on a transformative journey
0:15
Speaker 1: where we will exchange laughter. Of course, the best medicine
0:18
Speaker 1: of them all. Reflect on cherished memories. Remember that time
0:21
Speaker 1: that the little boy grabbed my hand instead of his
0:23
Speaker 1: mother's at the amusement park? Yikes. And of course, discover
0:26
Speaker 1: gratitude while navigating one of life's hardest challenges, loss. So
0:31
Speaker 1: get ready to groove with me, Portia, the producer. Let's
0:35
Speaker 1: dive in. Hello, everybody, and welcome back to Groove with Portia.
0:46
Speaker 1: I'm your host, Portia Booker. And as always, don't forget
0:49
Speaker 1: to like, share and subscribe to keep up with all
0:51
Speaker 1: things grew with Portia. Before I introduce my guest for today,
0:55
Speaker 1: I want to give a special shout out to the St.
0:58
Speaker 1: John's Evangelical Lutheran Church for giving us the opportunity to
1:02
Speaker 1: record the show in here. And also a special shout
1:05
Speaker 1: out to Pastor Becky Bolander for allowing this to happen.
1:09
Speaker 1: So as you guys know, one of the things that
1:11
Speaker 1: I love to do is interview different people who have
1:14
Speaker 1: taken their adverse circumstances and turned them into an opportunity.
1:18
Speaker 1: When I heard about Richard Williams' story, it really touched
1:21
Speaker 1: my heart because one of the key components is how
1:23
Speaker 1: do we take the cards that we've been dealt? How
1:27
Speaker 1: do we take the letdowns? How do we take these
1:31
Speaker 1: phrases said to us where our faith is tested and
1:34
Speaker 1: find a way to persevere? So welcome, Richard Williams, to
1:39
Speaker 1: Guru Portia. It's an honor to have you.
1:40
Speaker 2: Thank you, Portia. I'm so happy to speak with you today.
1:43
Speaker 1: Richard, I am too, especially because I think about so
1:46
Speaker 1: many other people who have been in the same boat
1:49
Speaker 1: as you, where you have children that are sick. And
1:53
Speaker 1: before we really dive in, Richard, to your story, for
1:57
Speaker 1: our audience who's tuning in, I always love to give
2:00
Speaker 1: people the opportunity to honor their loved ones who have transitioned.
2:04
Speaker 1: And I know for you, Trevor had a sibling who
2:07
Speaker 1: has transitioned. So for our audience who's tuning in, can
2:10
Speaker 1: you please share with our audience, Trevor's sibling, what you
2:14
Speaker 1: hoped for them and what you want people to remember
2:16
Speaker 1: about Trevor's sibling?
2:17
Speaker 2: Sure. Well, at eight and a half months of the pregnancy,
2:22
Speaker 2: one of the twins, hemorrhaged severely and expired, died in
2:27
Speaker 2: mom's womb. I have since named him Nigel. I gave
2:30
Speaker 2: both of my sons English names. I'm not really sure why,
2:33
Speaker 2: but I did. I named him Nigel. Obviously, Nigel was
2:37
Speaker 2: not born. He died just days before Trevor was born.
2:40
Speaker 2: So in large measure, I'm doing this to remember him
2:44
Speaker 2: because I miss him, and it still hurts to talk
2:49
Speaker 2: about him. And Trevor, of course, when he was born,
2:51
Speaker 2: nearly passed away as well because his bleeding was so
2:55
Speaker 2: out of control with a severe hemophilia so that would
2:59
Speaker 2: be you know my unborn son Nigel and then when
3:03
Speaker 2: Trevor was five his mother died so that was half
3:07
Speaker 2: of my family my son passing away and then their
3:11
Speaker 2: mother dying of cancer and then I married again and
3:14
Speaker 2: moved on but my ride and my efforts of what
3:19
Speaker 2: I'm doing on this trip that brought me here to
3:22
Speaker 2: meet with you is for those four very special loved ones,
3:26
Speaker 2: my two sons that had hemophilia, their mom who did
3:30
Speaker 2: the best she could to get them here to the
3:32
Speaker 2: earth to give them birth and only one made it
3:36
Speaker 2: and then she passed away when Trevor was five and
3:39
Speaker 2: then my wife after that who raised my son and
3:43
Speaker 2: treated him well but then she passed away when my
3:46
Speaker 2: son Trevor was in his 20s but now I've been
3:49
Speaker 2: blessed with another lovely woman and she's my fourth wife
3:52
Speaker 2: and I She is an angel. She's supported me doing
3:57
Speaker 2: this and she has had no reticence about me spending
4:00
Speaker 2: my time and paying honor and respect to those loved
4:04
Speaker 2: ones in my family who've passed away.
4:07
Speaker 1: And Richard, this is what I love about sharing stories
4:10
Speaker 1: about our loved ones. Because as I mentioned to you,
4:12
Speaker 1: your current wife and my mom have the same name.
4:15
Speaker 1: And when we think about each of the individuals who
4:19
Speaker 1: have come into our lives, they painted an imprint As
4:22
Speaker 1: you mentioned, Nigel, your two previous wives. Trevor, who's now
4:26
Speaker 1: the age of 38 now. Yeah, he is.
4:28
Speaker 2: He's 38.
4:30
Speaker 1: And I'm curious, Richard, I mean, when you think back
4:33
Speaker 1: to that time when you were told that Trevor had
4:36
Speaker 1: this hemophilia A. And he wouldn't live past a certain age.
4:42
Speaker 1: How did you manage to still hold that father role
4:47
Speaker 1: and also still be hopeful for a life for Trevor
4:52
Speaker 1: despite what the medical professionals were telling you? Because that
4:56
Speaker 1: could probably make you shut down as a parent. You're
5:00
Speaker 1: not sure. You're wondering, God, what did you plant before me?
5:05
Speaker 2: I didn't ever feel like I was going to give up.
5:11
Speaker 2: I wanted to be a dad. And the fact that
5:14
Speaker 2: I was going to have twins was a big deal
5:15
Speaker 2: for me to have two boys. I just thought that
5:17
Speaker 2: was the coolest thing, that I was going to be
5:19
Speaker 2: raising two boys. Well, I got one, and they said,
5:22
Speaker 2: you know, you'll be lucky if he makes it to 18.
5:25
Speaker 2: And I thought, I've got to squeeze as much in,
5:29
Speaker 2: because what if he doesn't make it to 18? Or
5:31
Speaker 2: what if he makes it a little farther? I wanted
5:33
Speaker 2: him to have as many opportunities as he possibly could
5:36
Speaker 2: so that I wouldn't be feeling the rest of my life,
5:40
Speaker 2: oh man, I failed as a dad because I didn't
5:43
Speaker 2: let him do this and I didn't take him there
5:44
Speaker 2: and I didn't give him that and I didn't want
5:47
Speaker 2: those feelings of doubt and regret. So I wanted to
5:50
Speaker 2: make sure I could do everything I could for him.
5:52
Speaker 2: But we had to be very careful because he could
5:54
Speaker 2: walk up the stairs and then by the time he
5:57
Speaker 2: get to the top of the stairs, he could be
5:59
Speaker 2: bleeding into his ankle. because his hemophilia was so severe.
6:03
Speaker 2: So we had to watch him like a hawk all
6:07
Speaker 2: the time. We could never take our eyes off of him.
6:10
Speaker 2: So for me, he was my first child, and I
6:16
Speaker 2: just figured, okay, this is what's happened. This is what
6:18
Speaker 2: I've got. This is what God's dealt me, and I'm
6:21
Speaker 2: going to do my best to take care of this
6:23
Speaker 2: boy because God must have thought I could handle it,
6:26
Speaker 2: or he's given me him for a reason. Or this
6:30
Speaker 2: has all happened. I don't know the reason. I don't
6:32
Speaker 2: need to know the reason. I just need to cope
6:34
Speaker 2: with it and man up and do the best I
6:37
Speaker 2: could to provide for his health, his welfare, and keep
6:41
Speaker 2: him in blood factor and find the best medical care
6:44
Speaker 2: I could get for him. And I did. I had
6:46
Speaker 2: all those advantages because I had a good salary as
6:49
Speaker 2: an engineer and I had good insurance coverage. So the
6:56
Speaker 2: fact that I had these boys with hemophilia didn't deter me,
7:00
Speaker 2: I was determined to be the best I could and
7:03
Speaker 2: give him the best life I possibly could. No matter
7:05
Speaker 2: how long that life was, I wanted him to have
7:07
Speaker 2: a good life.
7:08
Speaker 1: Yeah, I mean, you're a father on a mission.
7:10
Speaker 2: That's it.
7:10
Speaker 1: Legitimately a father on a mission.
7:12
Speaker 2: That's right.
7:13
Speaker 1: And I think about, Richard, can you share with our audience,
7:17
Speaker 1: let's be realistic, in the current medical system, it's expensive.
7:22
Speaker 2: Oh, yes.
7:22
Speaker 1: I mean, I'm curious, can you share with us a
7:25
Speaker 1: little bit about some of the costs from probably medication,
7:28
Speaker 1: emergency room visits. What did that look like for you?
7:31
Speaker 1: And how also did you keep your stress down from that?
7:37
Speaker 1: Because I'm sure.
7:38
Speaker 2: I don't know that I did.
7:39
Speaker 1: I don't think I did.
7:45
Speaker 2: When he was born, I was told that the blood
7:48
Speaker 2: factor he would need, because his body wasn't making any.
7:50
Speaker 2: You and me, our liver makes these proteins and enzymes.
7:54
Speaker 2: So if you get a cut or a bruise, your
7:56
Speaker 2: body starts to create platelets. your blood vessels shrink a
8:00
Speaker 2: little bit. So the blood slows down and platelets start
8:02
Speaker 2: to form. And then there's a little clot that happens.
8:04
Speaker 2: His body wouldn't do any of that. You, you, you know,
8:07
Speaker 2: you'd punch him in the arm or something like that. And,
8:10
Speaker 2: and then he'd just get a big bruise there. It
8:12
Speaker 2: would just bleed into that arm until you introduced the
8:15
Speaker 2: missing factor and it slowed it down. And it was
8:18
Speaker 2: going to cost $ 250, 000 to $ 300, 000 a year. That was
8:19
Speaker 2: just for the factor. That wasn't for, um, And if
8:27
Speaker 2: I had to take him to the emergency room. We
8:29
Speaker 2: started out not knowing how to infuse him. So we
8:31
Speaker 2: had to rely on medical professionals. And we were living
8:35
Speaker 2: in Palm Springs at the time. And the emergency room
8:41
Speaker 2: there had never dealt with a severe hemophiliac. So they
8:44
Speaker 2: had to bone up, learn about it, stock the factor.
8:47
Speaker 2: So when we took him in, so we've got a
8:49
Speaker 2: bleed in his elbow today or a couple of days later,
8:50
Speaker 2: he's got a bleed in his ankle. So they would
8:53
Speaker 2: have to put a tourniquet onto his upper arm. and
8:56
Speaker 2: sterilize the inner elbow, take the factor, mix it with
8:58
Speaker 2: sterilized water, hook it up to the needle, find the vein,
9:02
Speaker 2: introduce that, and then slowly release the pressure on the
9:07
Speaker 2: tourniquet so the blood would pump through his body and
9:09
Speaker 2: it would go to work in the places where it
9:11
Speaker 2: was needed. Well, that was all treatment after the fact.
9:15
Speaker 2: Then when we found out we could infuse him ourselves,
9:18
Speaker 2: that changed the game. But it didn't reduce the medical
9:21
Speaker 2: cost because the factor was still as expensive. but it
9:23
Speaker 2: reduced the number of bleeds he had. Because if we
9:26
Speaker 2: were able to treat him prophylactically, which means we were
9:29
Speaker 2: giving him factor in advance of a bleed rather than
9:31
Speaker 2: treating after the fact, man, that made it so much easier.
9:35
Speaker 2: We could send him to school knowing that he probably
9:38
Speaker 2: wouldn't get a bleed today because we've got the factor
9:40
Speaker 2: in his bloodstream. So we would keep track of it.
9:43
Speaker 2: We would keep track of, after his mom died and
9:47
Speaker 2: I remarried, my next wife and I kept track of
9:49
Speaker 2: the factor and we would, figure, okay, we spent like $ 285, 000
9:53
Speaker 2: so far, so let's, I mean, we didn't spend it.
9:57
Speaker 2: We bought that much through our insurance. I mean, thank
10:01
Speaker 2: God and USA and whoever for insurance because it saved us.
10:06
Speaker 2: We would count up to like $ 600, 000, $ 700, 000 worth of
10:11
Speaker 2: factor that we would purchase. And then I would update
10:14
Speaker 2: my resume because working for a large company, which I did,
10:18
Speaker 2: you get a million dollar medical insurance lifetime cap. And
10:24
Speaker 2: the insurance company would never go beyond the million dollars.
10:28
Speaker 2: So I thought, well, Trevor might use that up in three,
10:32
Speaker 2: three and a half years. The million dollars would be gone.
10:35
Speaker 2: Then what am I going to do? And as I
10:38
Speaker 2: was mentioning to the congregation here earlier, some people in
10:42
Speaker 2: the hemophilia community who were married with children with hemophilia
10:45
Speaker 2: would divorce on paper. so that the mom, now being single,
10:50
Speaker 2: could apply to the state and get the factor paid for,
10:54
Speaker 2: where if they stayed married, the state would call on
10:56
Speaker 2: the husband. Well, he'd have a plan that would take
10:58
Speaker 2: him to a million dollars, and then if his company's
11:01
Speaker 2: insurance plan wouldn't pay for anymore, they'd be stuck without
11:06
Speaker 2: insurance to buy that factor. Then their kid's life is
11:09
Speaker 2: in severe jeopardy, and he would probably die younger than
11:13
Speaker 2: he should have. So what I decided to do was,
11:17
Speaker 2: We found a home in a beautiful community where the
11:19
Speaker 2: school was great, the church was great, the shopping was good.
11:22
Speaker 2: There was a lake nearby. My kids could go kayaking.
11:25
Speaker 2: They could go fishing. There was a ski resort nearby.
11:28
Speaker 2: It was called Lake Arrowhead in California. It's about 100
11:30
Speaker 2: miles east of LA. And that's where we lived. And
11:33
Speaker 2: we raised our kids there. In the meantime, I would
11:36
Speaker 2: change jobs. We'd get up to the point where we
11:38
Speaker 2: had purchased so much factor. And I knew that I'd
11:43
Speaker 2: be getting near that cap So I'd update my resume,
11:48
Speaker 2: and I'd start circulating it. And with all that high
11:51
Speaker 2: population down there in big buildings, as a mechanical engineer,
11:54
Speaker 2: I had lots of opportunity. So I'd work in LA
11:57
Speaker 2: for a while. Then I'd take a gig in Palm Springs,
11:59
Speaker 2: or take one in San Diego, or another one in LA.
12:02
Speaker 2: And when I would interview, I would check with human
12:06
Speaker 2: resources and go, what's your medical insurance like? What have
12:09
Speaker 2: you got? Got a million dollar cap? Great. I'll sign
12:12
Speaker 2: the contract. And I would go to work for them.
12:15
Speaker 2: And I'd start all over again, keeping track of how
12:17
Speaker 2: much factory we spent. I did that for 20 years
12:20
Speaker 2: and just changed jobs every time. Now, there was a
12:23
Speaker 2: couple of times when a good job came along and
12:26
Speaker 2: I was only at like 500,000, maybe 480,000 in factory.
12:29
Speaker 2: And I thought, I'm taking it. I'm going to jump
12:32
Speaker 2: on it because it didn't affect my kids. They had
12:36
Speaker 2: no clue. The kids were young. And my wife had
12:41
Speaker 2: five kids when I married her. And I had the
12:43
Speaker 2: boy with hemophilia, and then she and I had another
12:45
Speaker 2: boy two years into that marriage. So I was supporting
12:48
Speaker 2: seven kids.
12:49
Speaker 1: Wow.
12:49
Speaker 2: And my wife, that's nine people. So they just knew
12:52
Speaker 2: I worked out of town. That's all they knew. My
12:55
Speaker 2: money was deposited. My wife was home, could support the kids,
12:58
Speaker 2: take care of them, buy whatever they needed. And I
13:00
Speaker 2: would come home on the weekends and be with the
13:02
Speaker 2: kids and do the best I could to go to
13:04
Speaker 2: their soccer games and their Little League games and their
13:07
Speaker 2: cello concerts. And then Saturday night, if they all go
13:09
Speaker 2: to bed, I'd leave and drive back to L.A. or
13:11
Speaker 2: San Diego and start all over again, go back to work.
13:14
Speaker 2: And that's how I solved the problem. I was going,
13:16
Speaker 2: I was taking new jobs and getting new insurance plans
13:20
Speaker 2: because that's, there might've been other ways to do it,
13:23
Speaker 2: but I didn't know what they were. So that's what
13:25
Speaker 2: I did. I just changed jobs. People in my neighborhood thought,
13:28
Speaker 2: what's wrong with that Rich Williams guy? The dude can't
13:31
Speaker 2: keep a job. He can't keep a job. What's wrong
13:34
Speaker 2: with him? They didn't know. And I didn't feel like
13:36
Speaker 2: I was obligated to explain to him what I was
13:38
Speaker 2: trying to do. So I just kept doing it because
13:40
Speaker 2: that's the way his stepmom and I decided that's how
13:45
Speaker 2: we're going to solve the problem. It would all be
13:47
Speaker 2: on me. The kids had a beautiful home to live in.
13:49
Speaker 2: They had the school and church. Their life was stable.
13:52
Speaker 2: Mine was all over the map. I was working with
13:54
Speaker 2: this company for a while, solving their engineering problems. And
13:57
Speaker 2: then I'd think, OK, it's time to go to the
13:59
Speaker 2: next job. And that's how we did it. That's how
14:02
Speaker 2: we solved it. And yes, it was stressful. And yes,
14:04
Speaker 2: there was always challenges. Sometimes my commute was four hours.
14:09
Speaker 2: to get home on a Friday night. Because if I
14:10
Speaker 2: was driving from San Diego in California, all that Vegas
14:14
Speaker 2: traffic starts in San Diego. They're all going to Vegas
14:16
Speaker 2: for the weekend. I get stuck in that. I wouldn't
14:20
Speaker 2: get home until 10 o'clock at night. That's what I
14:24
Speaker 2: felt I needed to do to be able to keep
14:26
Speaker 2: up with his insurance, because I didn't want to be
14:29
Speaker 2: without it.
14:29
Speaker 1: RACHEL BRONSON- Richard, what you're describing is what most people
14:33
Speaker 1: would see as from the outside in. Like, why is
14:36
Speaker 1: Richard changing jobs every day? Why can't he keep a
14:39
Speaker 1: stable job? But for you, it's I'm providing for my family.
14:43
Speaker 2: Exactly.
14:43
Speaker 1: My kid is sick.
14:45
Speaker 2: Exactly.
14:45
Speaker 1: I'm making sacrifices to ensure that my family is taken
14:49
Speaker 1: care of.
14:50
Speaker 2: That's correct.
14:50
Speaker 1: Yeah, I might miss a few baseball games or soccer practices.
14:55
Speaker 2: Concerts.
14:56
Speaker 1: Concerts or things, but I'm still making sure that my
15:00
Speaker 1: family is still together. And I'm glad you painted the
15:04
Speaker 1: picture about the divorce piece because I don't think people
15:08
Speaker 1: really understand how complicated medical insurance can get especially when
15:12
Speaker 1: you're married they look at everybody's income and it's a whole.
15:18
Speaker 3: Literally that is right it is it's a conundrum there's
15:23
Speaker 3: all sorts of names you can call it but that's
15:26
Speaker 3: what we coped with I couldn't change the situation I
15:30
Speaker 3: had to adapt to the situation and the situation was
15:33
Speaker 3: this company has a million dollar cap That company has
15:36
Speaker 3: a million dollars.
15:37
Speaker 2: That was common in those. I don't know if it
15:39
Speaker 2: still is because Trevor's now insured himself because he's a
15:42
Speaker 2: grown man. But at the time, that's what the playing
15:46
Speaker 2: field looked like. You could get a million dollar cap.
15:49
Speaker 2: And I knew people in the hemophilia community had gone
15:53
Speaker 2: to their cap. And then they went to submit another bill.
15:56
Speaker 2: And the insurance company said, we don't insure you anymore.
16:00
Speaker 2: We met your million dollars. Our obligation to you is done.
16:03
Speaker 2: Good luck. you know best wishes whatever and I don't
16:06
Speaker 2: know how some of those people solved it but I
16:10
Speaker 2: didn't want to be in that position I did not
16:12
Speaker 2: want to have to be there and go home and
16:15
Speaker 2: look at my son and tell my wife well we're
16:17
Speaker 2: out of insurance your kids are out of insurance too
16:20
Speaker 2: because of my son because he used it all up
16:23
Speaker 2: and that would have caused all sorts of family problems
16:26
Speaker 2: so I just felt I have skills marketable skills and
16:31
Speaker 2: I used them to make a living and All seven
16:34
Speaker 2: kids benefited from that because they all were insured. I
16:37
Speaker 2: had a good salary. They could live the lifestyle that
16:42
Speaker 2: they wanted. They didn't see me very often, and sometimes
16:44
Speaker 2: they'd say, well, you're never here. Well, yeah, that's because
16:47
Speaker 2: I'm provided with a roof over your head and the
16:50
Speaker 2: food that's in that refrigerator all the time. When the
16:52
Speaker 2: kids got to be teenagers, I helped them get cars
16:56
Speaker 2: and even my wife's kids. I don't know if I'd
17:02
Speaker 2: call it. I just felt obligated. I was the dad.
17:06
Speaker 2: I was the breadwinner. And nobody was going to babysit
17:10
Speaker 2: seven kids for my wife to go to work. And
17:12
Speaker 2: there's no way she could make enough to even pay
17:14
Speaker 2: somebody that would babysit for seven kids, or six when
17:18
Speaker 2: the kids started to go, or five as the kids
17:20
Speaker 2: grew up. So it all landed on me. And I
17:23
Speaker 2: did the best I could just to keep the paycheck
17:26
Speaker 2: coming in and keep the insurance coming in. So not
17:28
Speaker 2: only my son with hemophilia, but my wife's five kids.
17:32
Speaker 2: Her kids, I bore their financial responsibility as well because
17:36
Speaker 2: her previous husbands weren't. So it fell on me.
17:39
Speaker 1: Well, you stepped up to the plate. You were the
17:41
Speaker 1: father that a lot of people would love to have.
17:44
Speaker 1: You're making sure that the house is provided for. The
17:48
Speaker 1: kids got their essentials, the roof, you know, all the things. Right.
17:52
Speaker 2: Yeah.
17:53
Speaker 1: Richard, when I think about let's pivot a little bit.
17:55
Speaker 1: You brought up about Save One Life.
17:58
Speaker 2: Yes.
17:58
Speaker 1: I'm curious. Tell our audience the story about how you
18:01
Speaker 1: got connected with them and how.
18:03
Speaker 2: You're still obviously.
18:05
Speaker 1: Being kind of that ambassador for what they do.
18:07
Speaker 2: Yes, I am an ambassador for them. Save One Life
18:09
Speaker 2: was founded by my good friend Lori Kelly. When my
18:13
Speaker 2: wife Rita had just given birth to our son Trevor
18:18
Speaker 2: and we found out he had hemophilia, Lori had had
18:21
Speaker 2: a son five months after that. And she was just
18:25
Speaker 2: in as much of a panic and uneducated as we were.
18:28
Speaker 2: And so she thought, here's an opportunity. I can form
18:32
Speaker 2: a network of moms who are new parents of hemophiliac boys.
18:38
Speaker 2: And we can start collecting stories and distribute them all
18:42
Speaker 2: through the country to help these moms who have these
18:46
Speaker 2: boys with hemophilia and the new moms. So she reached
18:49
Speaker 2: out to my wife, Rita. And Rita said, well, I
18:52
Speaker 2: took Trevor to the emergency room. And this happened. The
18:55
Speaker 2: doctor and nurse did this. They didn't know how to infuse.
18:57
Speaker 2: Or they did. Or they didn't understand Factor. Or they did.
19:00
Speaker 2: All of these experiences, she was writing down and sending
19:03
Speaker 2: them to Laurie in Boston. Now, we hadn't met Laurie.
19:08
Speaker 2: But she was communicating with my wife, Rita. And then
19:12
Speaker 2: Laurie decided she was going to write a book. She
19:14
Speaker 2: was going to compile all these stories from these different
19:17
Speaker 2: moms and dads about what their experiences were with insurance.
19:20
Speaker 2: Pardon me, with home health care companies, with the doctors
19:27
Speaker 2: and nurses that she was meeting with, and then with
19:30
Speaker 2: the emergency room. So all these moms and some dads
19:33
Speaker 2: were sending Lori these stories. Here's our experiences. Lori wrote
19:37
Speaker 2: a book called Raising a Child with Hemophilia, and several
19:40
Speaker 2: stories about my son Trevor are in that book. Well,
19:44
Speaker 2: it's on its fifth or sixth printing by now because
19:49
Speaker 2: that was... 35 years ago when the book first came out.
19:52
Speaker 2: So that's how we started. In fact, even when Rita
19:55
Speaker 2: was on her deathbed, dying of cancer, at Scripps down
19:58
Speaker 2: in San Diego, she was still writing stories. Because I'm
20:01
Speaker 2: in the hospital, my mom's looking after Trevor, and my
20:04
Speaker 2: mom had this experience or that experience. So she was
20:07
Speaker 2: still writing. So that's how it got started. And then
20:11
Speaker 2: when I remarried, my friend Lori and her husband and
20:15
Speaker 2: her three kids were coming to California. And they said,
20:17
Speaker 2: I'd sure like to meet you and Trevor because I've
20:20
Speaker 2: got so many things about Trevor in my book. And
20:22
Speaker 2: I'd sure like to meet you. So we met at
20:24
Speaker 2: the Hilton in Anaheim, California. And her son and my
20:28
Speaker 2: son Trevor just clicked right off the bat because they
20:31
Speaker 2: were the same age. They both had hemophilia. And Lori
20:35
Speaker 2: turned out to be this sweet and genuine woman. She's
20:38
Speaker 2: been a dear friend ever since. Just love her to
20:39
Speaker 2: pieces because she is committed to the hemophilia community. So
20:44
Speaker 2: 25 years ago, her kids had been raised and they
20:49
Speaker 2: were on their own. And she was starting to realize
20:51
Speaker 2: there's other kids in the world with hemophilia that had
20:57
Speaker 2: no medical insurance, no medical expertise in those countries, no factor.
21:02
Speaker 2: And those kids are dying young. And their ankles are
21:05
Speaker 2: swelling up because of the bleeding internally. Their knees are
21:08
Speaker 2: swelling up. Their elbows are. And uneducated, poverty-stricken people don't
21:14
Speaker 2: have an understanding that that's a medical condition. They think
21:17
Speaker 2: that that child might be cursed or there might be
21:20
Speaker 2: some devilish thing inside that child. So they don't even
21:23
Speaker 2: get a fair break in some of those countries. So
21:26
Speaker 2: Laurie thought, well, you know, people with hemophilia in America
21:30
Speaker 2: that are living the lifestyle we live, could support other
21:36
Speaker 2: children if I figured out how to do it. So
21:38
Speaker 2: she did, and she founded these chapters, like the Hemophilia
21:43
Speaker 2: Foundation of India or the Hemophilia Foundation of Belize or
21:48
Speaker 2: different names, the Hemophilia Support Chapter of the Philippines. And
21:52
Speaker 2: if there was a person there that could tell Lori
21:56
Speaker 2: the children that needed the help the most and figure
21:58
Speaker 2: out a way to get funds to them, then she
22:02
Speaker 2: put those kids on her website and said, well, You
22:05
Speaker 2: that have hemophilia here in America, if you want to
22:07
Speaker 2: sponsor another child where you can help them deal with
22:09
Speaker 2: the issues, $ 450 a year. You can send the money
22:14
Speaker 2: to the chapter. They'll get it to the family. And
22:16
Speaker 2: she's got this network built now in 14 countries. Wow.
22:21
Speaker 2: Right now, I've been supporting children for several years. And
22:24
Speaker 2: I've had girls in India, and I've had little boys
22:28
Speaker 2: in other countries. Now I have a boy in Honduras
22:30
Speaker 2: that has severe hemophilia A, and I'm supporting a little
22:33
Speaker 2: boy in Burundi, Africa And he also has severe hemophilia A.
22:38
Speaker 2: So there's 900 hemophiliacs being sponsored right now through Save
22:43
Speaker 2: One Life. And there's more out there that are available
22:47
Speaker 2: to sponsor. Save One Life is sponsored, not sponsored, but
22:51
Speaker 2: funded by donors, some pharmaceutical companies, some personal donors. So
22:58
Speaker 2: the money that parents like me donate to Save One
23:01
Speaker 2: Life doesn't go to pay salaries of anybody running the
23:06
Speaker 2: foundation or the charity. That's all done by larger money
23:13
Speaker 2: that's not supporting the children, even though some of the
23:16
Speaker 2: money does. Anybody that supports a child, every bit of
23:19
Speaker 2: that money goes to that child. It gets transferred through
23:24
Speaker 2: digital means, through different banks and so on, and it
23:26
Speaker 2: goes directly to that family. And Laurie, for years, would
23:30
Speaker 2: go to those countries and make sure that those kids
23:33
Speaker 2: were getting the money, that their moms were getting the money,
23:36
Speaker 2: that they could buy school clothes, extra food, get something
23:39
Speaker 2: done just to improve the life of those kids with
23:41
Speaker 2: hemophilia because like I say, in some countries, those kids
23:46
Speaker 2: were ostracized because they would be seen with this huge
23:51
Speaker 2: swollen knee or a swollen hip or fingers and people
23:54
Speaker 2: would think there's something strange about that child. Don't play
23:58
Speaker 2: with him. Don't talk to his mom because we don't
24:00
Speaker 2: understand what that is and so it's a double detriment
24:05
Speaker 2: to those moms because they're being ostracized first by their
24:09
Speaker 2: own culture and their child has this incurable condition and
24:13
Speaker 2: they have no factor to care for it. So Save
24:17
Speaker 2: One Life is a remarkable organization. So they asked me
24:22
Speaker 2: if I wanted to volunteer and be a sponsor. So
24:24
Speaker 2: I said, yeah, heck yes, I will. So I'm now
24:27
Speaker 2: volunteering my time with this ride across the United States
24:31
Speaker 2: but also I serve on the scholarship committee. When the
24:34
Speaker 2: hemophiliac grows up, at 26, they no longer receive any funds.
24:39
Speaker 2: They better have themselves together by then. They're gonna have
24:43
Speaker 2: to grow up in their own community and figure out
24:45
Speaker 2: how to make a living. Well, they'll come back to
24:47
Speaker 2: Save One Life and say, I wanna go to college.
24:49
Speaker 2: It's only gonna cost me $ 700 this year to go
24:51
Speaker 2: to college. And so they apply for a scholarship, we
24:55
Speaker 2: check it out, and then we approve it. There's myself
24:59
Speaker 2: and two other people are on the committee And we
25:01
Speaker 2: read their, they're supposed to fill out a letter of reference.
25:05
Speaker 2: They're supposed to fill out the name of the school,
25:07
Speaker 2: how much the tuition costs. And we send the money
25:10
Speaker 2: right to the school. We say, this is tuition for
25:13
Speaker 2: that person. So you let him go to school now.
25:16
Speaker 2: And they go to school. Or we've had people apply
25:20
Speaker 2: for a grant because they wanted to go into the
25:22
Speaker 2: upholstery business. And all they needed was a sewing machine.
25:25
Speaker 2: They had the skill. They had the desire, but they
25:28
Speaker 2: didn't have the machine. So they'd say, oh, I need
25:30
Speaker 2: $ 900 and I'll buy this sewing machine. Then I can
25:33
Speaker 2: do something on my own because nobody will hire me.
25:35
Speaker 2: They see that I've got this swelling. Nobody will hire me.
25:39
Speaker 2: They're scared of me. But I can fix motorcycle seats
25:43
Speaker 2: or I can fix bicycle saddles or I can fix
25:45
Speaker 2: chairs in my little country. And so that has happened.
25:50
Speaker 2: So Save One Life is very specific.
25:52
Speaker 1: It helps everybody.
25:54
Speaker 2: It helps mainly men with hemophilia because very few women
25:58
Speaker 2: get it because of the genetic makeup. So I've volunteered
26:03
Speaker 2: to be an ambassador. I volunteered to take this ride.
26:07
Speaker 2: And I'm talking to great people like you who are
26:10
Speaker 2: helping me get the word out. And I serve on
26:12
Speaker 2: the scholarship committee because my heart goes out to those
26:16
Speaker 2: people because I've been through it. In a country like
26:19
Speaker 2: this where we have everything, we have insurance, we have
26:22
Speaker 2: great medical services, We have blood factor. And we still
26:26
Speaker 2: struggle with raising those kids. We still struggle. So those
26:29
Speaker 2: people in those other countries, some of them don't have
26:31
Speaker 2: a prayer. Those kids might not ever make it out
26:33
Speaker 2: of their teens because the bleeding will prevent them from
26:37
Speaker 2: walking or prevents their internal organs if they get an
26:39
Speaker 2: internal bleed. There's all sorts of things that could happen
26:42
Speaker 2: for them to have a shortened lifespan because of hemophilia.
26:46
Speaker 2: So I'm on board with Save One Life to do
26:49
Speaker 2: whatever I can. Yeah.
26:51
Speaker 1: And Richard, I'm grateful that people like you have taken
26:54
Speaker 1: their experience and want to pay it forward because we
26:58
Speaker 1: look at how vast the United States is with everything
27:02
Speaker 1: from technology.
27:03
Speaker 2: Yes.
27:03
Speaker 1: To education. Right. Where other countries, they don't have the luxuries.
27:09
Speaker 2: That is right.
27:10
Speaker 1: Even the access. I mean, my soul mother, she does
27:13
Speaker 1: a lot of work in Africa. She had a couple
27:17
Speaker 1: boreholes built so the children don't have to walk miles
27:20
Speaker 1: to get fresh water. We don't think about how easy
27:26
Speaker 1: we have it.
27:27
Speaker 2: That's true.
27:27
Speaker 1: We're spoiled. We take for granted everything.
27:30
Speaker 2: We do.
27:31
Speaker 1: For example, last week I was having an issue with
27:33
Speaker 1: my computer. and just, it wasn't working right.
27:36
Speaker 2: And I'm like, are you kidding me?
27:38
Speaker 1: Like internet is supposed to make things easier. Everybody's saying
27:43
Speaker 1: that AI is supposed to make things simple. And now
27:45
Speaker 1: my software is saying, I fired you today. And I
27:49
Speaker 1: had to remind myself, you know what? It wasn't meant
27:51
Speaker 1: to be today, but it'd get done at some point
27:54
Speaker 1: today where there's other people who don't have these kinds
27:59
Speaker 1: of problems like I do, but that's okay. I'm grateful
28:02
Speaker 1: for the ones that I have. Because we all have
28:04
Speaker 1: a cross to bear.
28:05
Speaker 2: We do indeed.
28:06
Speaker 1: And Richard, I think about too, these children that obviously
28:11
Speaker 1: because of their condition can't get a job. We don't
28:14
Speaker 1: even think about that piece.
28:15
Speaker 2: Yes, they may be intelligent and they may be physically capable,
28:20
Speaker 2: but the way they look, their bodies are now disfigured
28:23
Speaker 2: because of the swellings and the bleeding and people are
28:26
Speaker 2: scared of them. So they become ostracized and alone. Mm-hmm.
28:31
Speaker 2: And while you were talking about that, it brought a
28:34
Speaker 2: thought to my mind that I want to say about you.
28:38
Speaker 2: When you reached out to me, I did some homework
28:40
Speaker 2: on you. And I found out you're the real deal, too.
28:43
Speaker 2: You've been through some things. And you've changed all that.
28:45
Speaker 2: And now look what you're doing. You took what happened
28:48
Speaker 2: to you. You took maybe some bad choices you made
28:51
Speaker 2: or some bad things that happened to you. And you
28:53
Speaker 2: turned that around. And you've created this platform. Because you
28:57
Speaker 2: and I have that in common. We have that in common.
29:00
Speaker 2: Things happen to me. that weren't my fault, at least
29:03
Speaker 2: I don't think they were, and stuff just happened. And
29:07
Speaker 2: so my props are to you too, kiddo, because you've
29:12
Speaker 2: turned your situation out into something that benefits all these
29:15
Speaker 2: people that are listening to this program, your previous programs,
29:17
Speaker 2: the one you're gonna do next week. We're all gonna
29:20
Speaker 2: benefit from what you did, and that shows us we
29:24
Speaker 2: can do that. We have the ability to change the
29:28
Speaker 2: cards that we were dealt. We still have to play them,
29:31
Speaker 2: But we can change the outcome by sticking to find
29:34
Speaker 2: something we can do. Serving someone else, doing something for
29:37
Speaker 2: someone else solves a lot of problems. And I appreciate
29:41
Speaker 2: you and I respect you for doing what you do.
29:44
Speaker 1: Richard, I appreciate that. I mean, I think about where
29:47
Speaker 1: I've been in my life.
29:49
Speaker 2: Yes.
29:49
Speaker 1: As we talked a little bit before we started recording,
29:52
Speaker 1: I brought up about my TV career.
29:54
Speaker 2: Yes.
29:54
Speaker 1: I just it devastated me when it ended. But when
29:57
Speaker 1: I think about today and how I walked away from
30:00
Speaker 1: something that wasn't 100% what I wanted.
30:03
Speaker 2: Where today- But you thought it was at one time.
30:05
Speaker 1: Yeah, I did. I was like gun-ho married to that
30:09
Speaker 1: producer title and working my way up through the ranks
30:13
Speaker 1: and all that. But then once it, no pun intended,
30:16
Speaker 1: I divorced that. I took a step back and I said,
30:20
Speaker 1: now I'm happier with the stories I get to cover
30:23
Speaker 1: because that's what I wanted to do. That's what drew
30:26
Speaker 1: me into storytelling because there's so many fantastic stories like yours, Richard.
30:30
Speaker 1: I mean, you being a hardworking father, making those sacrifices
30:34
Speaker 1: for all your kids, both biological and adopted. And then
30:39
Speaker 1: now you're also paving the way for children all over
30:42
Speaker 1: the world who have the same hemophilia as Trevor to
30:46
Speaker 1: give them a chance in life.
30:48
Speaker 2: Right. Right.
30:48
Speaker 1: You know, there's something that there's a Disney movie I
30:50
Speaker 1: watched not too long ago. And the Disney movie said,
30:54
Speaker 1: when you're a part of something bigger, you have no
30:57
Speaker 1: reason to be angry. And I said that.
31:00
Speaker 2: That's a good line.
31:01
Speaker 1: How many of us have found what we're passionate about,
31:05
Speaker 1: how we can pay it forward for somebody else.
31:09
Speaker 2: Right.
31:09
Speaker 1: And now we find gratitude in where we are.
31:12
Speaker 2: Indeed. Indeed, we can. And doing something for someone else
31:19
Speaker 2: always brings us out of our own despair. If we
31:22
Speaker 2: sit at home and say, this terrible thing happened to me,
31:26
Speaker 2: and then maybe I'm tempted to start abusing drugs, I
31:32
Speaker 2: drink too much, I stay out too late, I spend
31:34
Speaker 2: too much, because that gives me a little bit of happiness.
31:38
Speaker 2: But if we're focused on ourselves, we don't get out
31:41
Speaker 2: of that loop. It's a circle.
31:46
Speaker 1: It has to wheel.
31:47
Speaker 2: Yeah, exactly what it is. It goes nowhere. Then you
31:50
Speaker 2: have to break out of it and find, what can
31:51
Speaker 2: I do for you today? How can I help you?
31:55
Speaker 2: How can I help my neighbor? Oh, wait, I heard
31:57
Speaker 2: that there's a widow two blocks away. She needs some firewood.
32:01
Speaker 2: I'm going to call my buddy over here. Let's go
32:03
Speaker 2: chop some wood for her. Let's go take some wood
32:05
Speaker 2: to her house. Or she needs a sidewalk repaired. When
32:10
Speaker 2: you find that you're doing something else for somebody that's
32:12
Speaker 2: got a problem, your problem diminishes in size and your
32:17
Speaker 2: ability to cope with it increases. You have this double
32:20
Speaker 2: thing happening when you serve someone else and go do
32:23
Speaker 2: something for someone else. That's the key to it. That's
32:26
Speaker 2: the answer to it. Go serve someone else. Do something
32:30
Speaker 2: good for them. Find somebody through your church, through your school,
32:33
Speaker 2: through your community, through your office, through your neighborhood organization.
32:37
Speaker 2: Find somebody. Or like With me, with other people with
32:40
Speaker 2: hemophilia like my sons have, that's where I focus my
32:44
Speaker 2: attention because then I don't feel so helpless. I feel
32:48
Speaker 2: like I'm doing something for somebody else. And even if
32:51
Speaker 2: something terrible still happens, and it could, I just have
32:54
Speaker 2: to cope with that because doing something else doesn't negate us.
32:59
Speaker 2: It doesn't insulate us from tribulation or hardship. We may
33:04
Speaker 2: still have it. We just have to cope.
33:06
Speaker 1: 100%. Richard, we're going to be concluding our conversation for today.
33:11
Speaker 1: And before we wrap up, for our audience who's tuning in,
33:14
Speaker 1: if they obviously want to connect with you on this 5,000-mile
33:17
Speaker 1: bike ride, if they want to obviously book you to speak,
33:20
Speaker 1: if there is possibly a book that you're working on,
33:22
Speaker 1: please share with our audience how they can connect with you.
33:25
Speaker 2: That's a great question, Portia. Thank you. You can go
33:29
Speaker 2: to saveonelife.net. Save One Life, all lowercase, saveonelife.net. I'm a sponsor,
33:38
Speaker 2: not a sponsor, I'm an ambassador for them. I sponsor
33:40
Speaker 2: children through them in other countries. And I also have
33:44
Speaker 2: a Facebook page. You can look for me on Facebook,
33:46
Speaker 2: Rich Williams. And I've been out on the road now
33:49
Speaker 2: for 17 days. I've got five more days to go
33:52
Speaker 2: to get to Portland, Maine. But there's a documentary coming out.
33:55
Speaker 2: There's a filmmaker that's been following me from place to place.
33:59
Speaker 2: That's coming out soon. So most of the information about
34:03
Speaker 2: my ride will be on saveonelife.net or my Facebook page. Now,
34:09
Speaker 2: every time I do a post, the folks at Save
34:12
Speaker 2: One Life put it on their Facebook page and on
34:14
Speaker 2: their Instagram page, so it should be pretty easy to
34:16
Speaker 2: track down.
34:18
Speaker 1: Yeah, and you can probably, of course, use AI as
34:20
Speaker 1: your friend to find Richard, too.
34:22
Speaker 2: You just Google some crazy old man crossing the country
34:26
Speaker 2: on a motorcycle, and I pop up.
34:28
Speaker 1: Yes, and we'll put that information, too, in the show notes, saveonelife.net.
34:33
Speaker 1: So if you obviously want to connect with Richard, you
34:34
Speaker 1: can find him, follow his journey. If you want to
34:37
Speaker 1: meet with him as he's on the road, on the motorcycle,
34:40
Speaker 1: you can catch him somewhere. Just don't distract him while
34:42
Speaker 1: he's driving type of thing. Before we conclude for today,
34:47
Speaker 1: once again, thank you so much.
34:48
Speaker 2: Thank you, Porsche. It's been such a pleasure to meet you.
34:51
Speaker 1: Thank you. It's been an honor. I'm glad that we
34:53
Speaker 1: got to connect.
34:54
Speaker 2: Me too.
34:54
Speaker 1: Making this drive, this 5,000 mile tour from Portland, Oregon
34:59
Speaker 1: to Portland, Maine.
34:59
Speaker 2: Well, I started my home in Fort Shaw, Montana, and
35:02
Speaker 2: then went to Portland. And then in Portland, Oregon, I
35:05
Speaker 2: turned back around. That's why it's 5,000. It's only about 4,000
35:10
Speaker 2: miles across the country, but I had to add that
35:12
Speaker 2: extra from my house to Portland, Oregon. So I told
35:15
Speaker 2: everybody at Save One Life I wanted to go from Portland,
35:17
Speaker 2: Oregon to Portland, Maine. My mentor who's guided me on this,
35:21
Speaker 2: Doug Mildrum, he went from water to water, coast to coast.
35:24
Speaker 2: And I just didn't feel like that was necessary. I
35:28
Speaker 2: took a little bit shorter version, went Portland to Portland.
35:30
Speaker 2: But I'm still thrilled that I have done it. My
35:33
Speaker 2: wife's been very supportive of me doing it. So yeah,
35:36
Speaker 2: four more days and I'll reach my goal.
35:40
Speaker 1: Richard, for our audience who's tuning in, what would you
35:43
Speaker 1: like them to take away from your story? How can
35:48
Speaker 1: they step out of the, I'm so zoomed in on
35:52
Speaker 1: the adversity that's in front of me and find a
35:55
Speaker 1: way to take that adverse circumstance and see it from
36:00
Speaker 1: the space of I'm adding verses of wisdom to my life, right?
36:04
Speaker 1: How can I take that and pay it forward?
36:08
Speaker 2: I think there's two ways, two ways that I think
36:11
Speaker 2: are very important. You, um, First of all, need to, well,
36:19
Speaker 2: from my perspective, I'm out here trying to make people
36:24
Speaker 2: aware of hemophilia. So donating, donating, sponsoring a child. It's
36:30
Speaker 2: not that expensive. $ 450 a year to most of us.
36:34
Speaker 2: That's not that big a deal. Sometimes our car payments
36:36
Speaker 2: are even more than that. And you do that monthly.
36:39
Speaker 2: So you sponsor a child for $ 450. to give another
36:43
Speaker 2: little child for a few years a much better life
36:46
Speaker 2: because it doubles the family's income in these poor countries.
36:50
Speaker 2: So donate. Sponsor a child. You can do those things financially.
36:54
Speaker 2: I do that, and when the money comes out, I
36:57
Speaker 2: put it on my credit card. Honestly, I don't even
36:59
Speaker 2: notice it. It's not that it doesn't hurt me that
37:03
Speaker 2: much financially to do that, and I think the other
37:06
Speaker 2: people that sponsor children find that, that same thing that
37:10
Speaker 2: it doesn't really hurt them that much when it just
37:13
Speaker 2: comes out of the credit card and then you get
37:16
Speaker 2: your credit card bill and you say, oh, what is that?
37:17
Speaker 2: Oh yeah, I'm sponsoring that child over in Belize or Honduras.
37:23
Speaker 2: So the second thing is you've got to serve someone else.
37:30
Speaker 2: You will get depressed if you just focus on your
37:33
Speaker 2: own tragedy and you relive it. And it's very hard
37:38
Speaker 2: when someone dies because that is so final. If you're
37:42
Speaker 2: dealing with someone that has a long-term illness, you pray
37:45
Speaker 2: for that person. You go and meet them in the
37:48
Speaker 2: hospital when they're suffering or at home if they're homebound
37:56
Speaker 2: because of an ailment or injury or a terminal illness.
38:00
Speaker 2: You've got to serve someone else because if you don't,
38:06
Speaker 2: all you're thinking about is your own problem and then
38:08
Speaker 2: it exacerbates it gets worse and you become more depressed.
38:12
Speaker 2: And then you might find yourself, as I mentioned just
38:16
Speaker 2: a moment ago, you might find yourself resorting to some
38:19
Speaker 2: sort of a substance abuse. Like you might find pleasure
38:23
Speaker 2: in drinking, but that's only temporary. And then you end
38:26
Speaker 2: up drinking too much. No, don't do that. Stop that.
38:30
Speaker 2: Don't go down that road. It's a dead end road.
38:33
Speaker 2: Don't do it. Go out and find somebody to help.
38:36
Speaker 2: Assist someone. Read to the To the blind, go to
38:41
Speaker 2: the Big Brothers organization and adopt a teenage boy to
38:46
Speaker 2: hang out with once a week or a teenage girl
38:49
Speaker 2: or something that needs a parent figure in their life.
38:52
Speaker 2: Do something like that and then you're not going to
38:56
Speaker 2: be focused on the pain in your own heart. You
38:59
Speaker 2: can take the good that you have inside of you
39:02
Speaker 2: and give it to someone else who needs it worse
39:05
Speaker 2: than you do, needs it more than you do. Those
39:07
Speaker 2: are the two things I strongly suggest.
39:10
Speaker 1: Well, I appreciate it, Richard. And again, thank you so
39:13
Speaker 1: much for coming on the show.
39:14
Speaker 2: My pleasure.
39:15
Speaker 1: Well, everybody, that was Richard Williams that you heard from
39:19
Speaker 1: today on Group Portia. And that concludes our conversation. And
39:22
Speaker 1: until next time, everybody, peace and hair grease, everyone.