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- This is One-On-One.

- I'm an equal American just like you are.

- The way we change Presidents in this country is by voting.

- A quartet is already a jawn, it’s just The New Jawn.

- January 6th was not some sort of violent, crazy outlier.

- I don't care how good you are or how good you think you are, there is always something to learn.

- I mean what other country sends comedians over to embedded military to make them feel better.

- People call me 'cause they feel nobody's paying attention.

_ It’s not all about memorizing and getting information, it’s what you do with that information.

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- That's a good question, high five.

(upbeat music) - Hi everyone, Steve Adubato here with my colleague Jacqui Tricarico.

Jacqui, let's tee up what people are about to see in the next half hour.

Together we went to the annual New Jersey Sharing Network 5K Celebration of Life event.

Describe the event and what folks are about to see.

- Yes, Steve, we've had the privilege of going to this event so many years in a row now, the two of us, to be able to speak to the people that are directly impacted by organ and tissue donation.

From the one side of things where it's the families of loved ones who have passed away and gave the ultimate gift of life to the people who are receiving those organs, those lifesaving organs, that are changing their lives for the better.

And you have thousands and thousands of people gather every year for this incredible event, one of the biggest in the state, to really celebrate life.

And you just feel the emotions from all the different types of people that are there that day and we got to speak to a lot of them that you'll see in this next half hour.

- Yeah, as Jacqui said, we've been doing this for years with the Sharing Network, our long time partners.

Promoting, I shouldn't say promoting organ and tissue donation, but doing public awareness around organ and tissue donation.

And, you know, you think because you've done something many times, oh, it's the same thing.

It's not, you meet different people who have had different experiences, life-changing experiences, painful experiences of losing loved ones, as Jackie said, that other people who are alive because they have received the gift of life from someone else.

And the other thing, Jacqui, I don't know if this struck you, 'cause Jacqui did most of the interviews and did a great job on this, is the family members who have lost loved ones have this incredibly positive, upbeat attitude in spite of the pain and suffering they've been through.

Because they know their loved one has given the gift of life to someone else.

- They know that other people are continuing to live on because of the selfless act that their loved ones did to be able to donate their organs and save anybody from babies, I spoke with a 7-year-old little girl, Sheila, who had just received a liver transplant seven weeks prior to this event, and she's living today because of that organ donor.

If it wasn't for that organ donor, she would not have been there at that event and I would not have been able to speak to her and her parents.

So, you know, when you're really putting this into perspective and thinking about the numbers, 100,000 Americans are on waiting lists waiting for lifesaving organs and about 4,000 of those-- - 4,000.

- Yeah, here in New Jersey.

So, you know, if you became, and people watching, you become an organ and tissue donor, you could save so many lives, eight lives you could save, and then others with your tissues and other things.

So, you know, it's something to really think about.

And I know the New Jersey Sharing Network often says it should be part of that dinner table conversation with your family members to know how everybody feels about this and have honest conversations.

So, you know, in the face of really a horrible thing happening to a family member, you know what their wishes are going into something so painful and something positive could come out of it.

- And finally, as we go to these interviews, if you wanna find out more, the website has been up for this entire introduction from Jacqui and myself, the website for the Sharing Network, find out more.

Just find out more.

Decide for yourself.

For Jacqui, myself, and our terrific team, The annual 5K at the New Jersey Sharing Network over in beautiful New Providence, New Jersey.

Check it out.

- Uplifting music.

Every year we talk about this, I ask why today?

'Cause this is one of many events why today is such a special day today?

Remind everyone.

- Today is an extremely special day at our headquarters in New Providence.

Donor families, recipients, and advocates for donation and transplantation come together to celebrate life.

- How's the event changed over the years, other than getting much bigger?

- The evolution and the way that this event has evolved for families is incredible.

It's a place for them to come to feel at home, and always be a part of our lives as long as they want us to.

- I know that your father was an organ donor, so you knew, you didn't know.

Did you know going into this that he was an organ donor?

- No.

- [Jacqui] Was that a surprise?

- That was a surprise to our entire family.

When we were having discussions, when the doctors came in just to tell us, you know, he's passed, we had the organ donors come in and they were telling us like, hey, he's actually registered.

So we were all looking at each other.

'Cause I don't think he had conversations with my mom, but he actually had conversations with one of his nephews.

So we found out around like the funeral time and he's like, "Yeah, he was signed up" - So how many lives was he able to save with his donations?

- He was able to save, I believe three from what we know right now, his liver and the two kidneys that he was able to give away in that short period of time.

Just trying to find everyone to get there, yeah.

- How did your perception on organ and tissue donation change going through that experience?

- So it's actually interesting.

I'm a nurse so I work on the other end of it, like the logistics and stuff.

So seeing it in a different perspective was still a little different for me.

But I think it felt very wholesome and especially kind of giving some sort of clarity, like especially when he's passed, and again, it was something that he would do.

So even though it was like a shocker to us, it kind of just, we just had conversations and we're like, "Yep, that's him."

Like he would totally do something like this.

Yeah.

So, no, I'm definitely grateful that even though he's passed, he's still able to enhance people's lives.

- Yeah.

- And how are you honoring that today with running the 5K?

Talk about your team.

- Of course, yeah, so we started Lalli's Legacy.

It's pretty soon that he's passed.

It's almost about to be six months in a couple days.

It just felt right being able to run for him.

He's always ran for everyone else and others, so.

- He was a marathon runner, right?

- He was, yeah.

He ran five out of the six world major like marathons.

- This probably feels so fitting then to be able to get there and run for him today.

- Yes, we actually ran our first 5K with our dad around 2016, 2017.

- Yeah.

- And that was also for like a non-profit as well.

So this is our second one and we, it just felt right.

He's ran for everyone else.

So today we're here to run for him.

- Mother, son, kidney donor, kidney recipient.

But when you hear that, you think, "Oh, you donated your kidney to your son," but that's not how the story unfolded, right?

So first Omari, tell me about your diagnosis in 2010, and how that changed your life significantly.

- Well, yeah, I was diagnosed in 2010 with a rare kidney disease, and it was projected that I would be on dialysis in about 20, 30 years.

And you know, life threw its deck of cards at me, I went septic, and had to go on dialysis immediately.

And like I said, 20, 30 years turned into a few years, and yeah, it's been a journey from dialysis to the kidney, just the process of looking for a kidney donation.

- So the six person swap, it's called a paired-kidney exchange.

- Exactly, and many people- - Can you describe it for us?

- Many people don't realize what that is.

So if you have a loved one, or if you just wanna be a donor without a directed recipient, you actually enter a pool where they can match people of different blood types, and secondary blood types, so that I actually donated to a stranger,l and a stranger donated to Omari.

So there were three donors in our case, and three recipients.

And it all happens at the same time, so all six of us are in the hospital at the same time.

- Were you meeting each other?

- Omari and I actually, (laughing) the recipients are on one side of the transplant floor for obvious reasons, and the donors are on another.

So we would get together in the break room, and sit together and what have you.

But it was a little known thing that's becoming more and more popular.

Many of the medical centers now do the paired swaps, but you have to be at a center where someone would suggest it.

- And how are you both feeling today?

This is in 2021.

- Amazing.

- You're both feeling great?

- Amazing, three years in.

- The new kidney's doing great for you?

- Yeah.

- That's awesome.

- Tell me about Tanya.

- Tanya was 11 years old and she suffered a stroke, was taken to hospital, ended up in New York, and was discovered to have restrictive cardiomyopathy.

Was told she would not be going home, that she needed a heart transplant in order to do so.

Fortunately, unfortunately, the wait was three months.

A young girl, Stephanie, we don't know any other details beyond that, was involved in an accident and her family made the decision to donate her organs.

She happened to be another 11-year-old girl.

- Mm.

- So, age for age.

And three weeks later, she was out.

- So, your wife, Tanya, 11 years old, there's another 11-year-old girl.

- Yes.

- This happens.

Tanya's not in your world at the time.

- No.

- Okay.

- You met her when?

- I met her in 2009.

We worked at a investment firm together.

Opposite areas, developed friendship, and next thing you know, we're together.

Did she tell you that right away?

- [Ron] No.

- She didn't tell you about it?

- No, she did not.

The scar is visible and I noticed it, but it took some time before she actually talked about it.

She always told me that it was just something that when people saw and heard the story kinda freaked them out a little bit.

- What did it do to you?

- And just kept it to herself.

I was amazed.

I'd actually never, I'd never met anybody who had gone through something like that.

So this was completely new, and like I said, it blew my mind.

It really did.

- Second Chance.

- Yes, sir.

- The name of the team.

Why?

- Second chance of life.

It just happens to be used here.

She would never have been able to leave the hospital, had a heart not become available.

- And the team has raised a hundred- - The team has raised just about $100,000 in the time we've been doing this.

- What's it done for you?

Not just being with Tanya, but this experience of raising money, of making a difference, being part of the sharing network.

What's it done for you, personally?

So, being a dad, being a husband, being a brother, a son, all amazing, important things in life, yes.

- But something like this, it gives you purpose beyond, I don't wanna say what's expected of you, but it just brings things to another level.

And being able to be the chair of this organization allows me to, in some small way, put my kind of stamp on things.

And it allows me to use my voice and Tanya's story to spread the word.

- lI worked for an ophthalmologist.

- [Jacqui] Oh.

- And when he did my eye exam, he said, "You know you have corneal disease, don't you?"

And I said, "No, I don't."

(chuckles) Both eyes were involved, and I asked him what that meant.

And there was no treatment for it, you know, so we monitored it for years.

But he said, "Eventually you're going to need a transplant," which just seemed shocking to me, I didn't know about this.

- So one eye was done in 2016. and the other in 2017.

So two different donors that were giving you the gift to be able to see again.

Talk about that process, at both times, of going through this transplant, and knowing that you were able to receive this gift from another person.

- It was really, truly a sacred journey for me.

You know, I've had other surgeries before, but this one was different.

You know, these two individuals left the world.

And in their darkest time, in their darkest moment, and a time of sorrow for the family, they were thinking about giving a gift, giving a sacred gift, a kind gift, doing something for someone else.

So, there's something about that that is very sacred, and I feel as if I'm looking through their lenses when I see the world, I feel these two individuals created this miracle for me, and for probably many other people who were recipients of other organs or tissue donation.

And you're honoring your donors today by being here at the 5K.

Talk about how important that is for you to be here, to celebrate them, and be with all the other people here that have gone through similar, but different journeys.

- Yes, it's just an honor and a privilege.

And, you know, I think about my donors every day.

I mean, every single day, when I wake up and look in the mirror, brush my teeth, and, you know, say hello to them.

And I'm sure everybody here has that same feeling, so to have us all come together, and feel that energetically, and feel that reverence for life, and for all life, it's just very powerful.

- The New Jersey Sharing Network, - Rachelle, you've been an author for all your career, writing many books.

This book is a little different, this project a little different for you.

Tell us how you got inspired to write about organ and tissue donation.

- I learned that there weren’t really any books about this subject.

It was kind of surprising to me because there children's books about everything but nothing about this.

And there are a few that focus on the journey of an organ recipient, let's say a child who needs a new heart, but there was nothing that honors the donor, and with the focus being the donor or the families of the donor.

And because I was a social worker for 35 years and I'm an author, I thought I'm gonna be the one to write that book.

I decided I wanted to write that book.

- And you wrote this beautiful book, this story, Jackie, you were the first one to read it I heard.

- I did, I was very lucky.

I was so excited when I heard that there was even an idea to do this, because working with families, there are a lot of children we work with, and it's so hard for the families to have the language.

How do you talk to kids about this?

They know something's going on, but they don't quite understand.

So I was so glad to hear that she was interested in this, and you know, I was able to take a look at it the first time.

It was amazing from the start, you know, and I was able to give feedback kind of based on what would be great within what kids really hear, what do they need, what do they need to know?

How can we present this to them in a way that makes sense for them and their families.

- And how have you seen this being used as a tool so far with the work that you're doing within families and their journey through organ and tissue donation?

- I've already, even though it just came out, I've already been able to share it with quite a few families, and I cannot tell you the positive feedback I've received.

You know, I had one family who's been going to grief support groups for the last year, and she said, you know, my daughter now is looking at this idea of a gift as a totally different concept, you know, and what her father was able to give.

I've worked with recipients who've met their donor families, who've given the book to them and to their kids, you know, and that had that impact as well, and to support them through it, it's been really a blessing.

- The hospital systems and the New Jersey Sharing Network, it is a collaboration, a partnership.

How important is it for hospital systems to have that open dialogue, that communication with the New Jersey Sharing Network during a time when a lot of the patients are going through really hard, difficult times in their lives?

- So first, without the Sharing Network, and all the great work they do, we would not be able to do what we do.

As a system, RWJ Barnabas Health has done over 12,000 transplants collectively.

- Wow, 12,000 transplants, saving 12,000 people's lives.

- 12,000 people's lives, and their families, and their significant others.

And we could never have done that work without all the great work that all the Sharing Network and organizations like the Sharing Network do for all the donation.

So we partner with them, we collaborate almost daily.

We try to make it better for the donation side and the transplant side.

And with their help, we're able to really impact the lives of many people.

And it gives the ability to be able to attend that child's wedding, to see that grandchild be born.

And we could never do any of that kind of work without them.

- 4,000 people in New Jersey waiting for an organ, 68% of them are people of color.

Why is there such a disproportionate statistic that represents so many people of color waiting for an organ?

- You know what it is, it's so many different things that's out there, you know, in the media, word of mouth, people talking to each other about, you know, organ and tissue donation.

And for us, in the African American community, it's just not talked about a lot, especially like in our low income areas, and it's like they don't understand the actual need to actually be a donor.

So for me to be able to advocate for my friends, my family, the people from where I come from, they need to know what the need is.

- How do you do that?

- I go out- - Just in Newark the other day, right?

- Yes.

(chuckles) - You know it well.

- Yes.

- You were just there doing what?

- I was at St. Paul's Baptist Church on Badger Avenue supporting the church there, they had their community day there.

The whole month of April, I think I volunteered or was at any type of event at least three to four times a week the whole month of April.

Just now recovering from surgery, one week.

- You?

- Yes.

- Here at the 5K?

- Yes.

- Doing all that?

- Yes.

- Why?

- Because you know what?

I can't let anything discourage me or get me down.

It was like once the doctor cleared me and said, "You know what?

June 3rd, you're good to go," I was right back out there.

So this past week, we did a talk, myself and one of the other board members over at Trinitas Hospital.

The next day, we were at the Bonnie Raitts concert at the New Jersey PAC Center advocating.

So we advocate as much as we can.

If I'm in a grocery store, shopping for hair, anything, you know, people ask me, "Oh, what does your bracelets mean?"

- [Steve] You got yours?

- Exactly, oh, we have white lettering now.

(laughs) - [Steve] I gotta get a new one, this is old.

- Yes, so- - [Steve] So people ask about it?

- Yes, they do, they ask about it.

And I said, "Oh, let me tell you about organ and tissue donation," and I start with letting them know I am a donor mom.

And then, they ask me, "What is a donor mom?"

So when they engage with me, "Oh, well, let me tell you about a donor mom."

And then I proceed to let them know that during my daughter's transition, she was able to save three lives from the state of New Jersey by organ and tissue donation.

- I went to see my surgeon in February of 2023, and it was determined that a transplant was the only thing that was gonna save my life.

- Your status needed to be upgraded because of the condition that you were in.

You get that call, the transplant happens.

Talk about that, how everything happened and how you felt right after that transplant.

How long did it take you to get back on your feet?

- Well, I remember the day I received a phone call.

All I knew was from that moment on I was gonna live.

And when I woke up from transplant, I felt like my life had just changed.

I did have emergency surgery the next day after my transplant, but I was walking with my walker within two weeks.

And now I don't use a wheelchair at all.

I only use a cane, and I've just been living life like it's just... Everyone asks me if I'm happy to have my old life back.

No, I'm happy to have a second chance to do it better.

- Sheila was born with biliary atresia, which basically is a condition where the bile ducts aren't formed.

So all the bad stuff that is usually filtered out by the liver stays there.

So she was, basically, halfway to cirrhosis of the liver by two weeks old.

At three weeks, she had a Kasai procedure, which is basically kind of duct taping everything together.

And we always knew that liver transplant would be in her future.

So she had an infection in August of '23 that was just escalated really quickly and put her in the ICU.

So she was evaluated and listed in October of '23, and we received the phone call on April 17th, 2024, that her new liver was ready and she was transplanted seven weeks ago, April 18th.

- Wow, seven weeks ago.

Chris, tell me about that feeling that you and your wife probably shared when you got that phone call that the liver transplant was available.

Because I know talking to so many families, you feel torn because you're so happy that you have this lifesaving organ, but you feel for that family who has lost someone in their life.

- We couldn’t be more thankful for the gift we've given, but honestly, emotionally, we can't even go there yet.

- It's still so fresh.

It was just a couple weeks ago, really.

How do you know, and how are the doctors feeling about the transplant?

- Fantastic.

So she has actually, like every milestone has hit on the earlier side.

As you can see, seven weeks ago, and if you saw her on the street, you wouldn't think that anything had happened to her.

So she's been doing really great - And are you hoping to connect with the donor family if they're willing to do so?

'Cause it's all very personal for everybody and their own story and their own process of healing through this.

But are you hoping to maybe connect with them one day?

- Yeah, we are.

You know what, I don't think that this is the case where you can use words to say thank you because it was probably the worst day of their life.

And to think that they saved our baby is just, you know, but that's all you have.

So we do hope that we can connect and show them that we're honoring them and their loss by trying to spread the word and just keeping Sheila safe.

- Why is this 5K so great?

- 5K is amazing 'cause it brings together kind of all aspects of donation.

It's a moment of celebration for our donor families to honor their loved ones.

A moment of celebration for recipients to thank people for the gift.

It's a moment of celebration for people who are waiting, who have hope that there's more.

And then for everyone who's part of the community, they get to come together and really support and care about and love each other.

- In your role here at the Sharing Network, it says in the notes, "She helps grieving families."

But it means so much more than that, talk about it.

- You know, one of the hardest things we all do is lose the people we love.

It's the absolute hardest thing we do in life and it affects every single person from every background, and every aspect of life.

And what we can do here is not run away from it, which happens a lot in life.

People are scared of death, they're scared of end of life, they're scared of grief.

- We are.

- And we can run to it, and we can support you, and be there for you.

And understand that grief is multifaceted, affects everywhere.

And that we don't end grieving, we learn to live with it.

We grow around it.

We learn to honor and remember.

And that's really our goal here, is to support you through that journey.

- Connect families, people grieving to organ and tissue donation.

- You know, in death there's rarely hope.

You know, death is a dark moment in our life.

And what organ and tissue donation do is give you kind of this moment of hope that your loved one's life is not gonna end on this terrible note.

It's gonna end where they're gonna save others, they're gonna help others, they're gonna live on and create this legacy that you really can never anticipate, you never know about till you're part of this journey.

And then they move on and they affect all of these people.

And that's kind of how I think of that.

It's a moment of hope in darkness, that you can hold onto that helps you in those tough moments of grief.

- Uplifting Music - [Narrator] One-On-One with Steve Adubato is a production of the Caucus Educational Corporation.

Celebrating 30 years in public broadcasting.

Funding has been provided by Horizon Blue Cross Blue Shield of New Jersey.

The Russell Berrie Foundation.

Robert Wood Johnson Foundation.

The Healthcare Foundation of New Jersey.

The New Jersey Economic Development Authority.

The Fidelco Group.

Valley Bank.

Kean University.

And by The North Ward Center.

Promotional support provided by Meadowlands Media.

And by And by Northjersey.com and Local IQ.

- I'm Tim Sullivan, CEO of the New Jersey Economic Development Authority.

Since joining the NJEDA, I've been struck by the incredible assets and resources that New Jersey has to offer.

The NJEDA is working every day to grow New Jersey's economy in a way that maximizes the values of those assets to benefit every single New Jersey resident.

This includes more support for small businesses and a focus on reclaiming New Jersey's position as a leader in the innovation economy.

Visit njeda.com to learn more about how NJEDA is building a stronger and fairer New Jersey economy.