(upbeat music) - According to the Illinois Secretary of State's office, around 4,000 Illinoisans are on the organ transplant waiting list, and about 300 people die every year waiting for a transplant.

And that's with six and a half million people registered as donors.

Tonight we're joined by Shadaye Hunnicutt with the Gift of Hope Organ and Tissue Donor Network that covers most of Illinois, including our viewing area and Northwest Indiana.

Larry Lefferts is an organ donation advocate from Canton who can tell us about the power of organ donations.

Thank you both for being here, appreciate it.

- Thank you for having us.

- Let's hear about Gift of Hope first and the work they do in trying to get folks to donate.

- Yes, Gift of Hope is an organ procurement organization.

So what that means is we coordinate the organ donation process from start to finish after a person has been declared legally dead.

Gift of Hope comes in and talks to families about the organ donation process.

If their loved one was not registered as a donor, they allow the family to give consent for them to be a donor.

As you mentioned, there are over 4,000 people just in Illinois alone waiting for an organ transplant.

Nationally, there's over 108,000 people waiting.

Gift of Hope's mission is to save and enhance as many lives as possible through organ and tissue donation.

And one of the ways that we do that is through education.

It all starts with education about organ donation.

- So do you have representatives then at different hospitals who are kind of on standby if a person does come in and either... They're dead or they... - Yes, exactly.

They're called donation liaisons and they're specially trained to deal with grieving families.

I'm sure Larry remembers who worked with him.

And with both his son and his wife's deaths.

But they are the ones, the only ones that are allowed to check the registry to see if someone is registered as a donor and print off what is called a first person authorization if they're registered.

- Okay and you said the family can legally give consent if the person has not filled out their donor card, what do you find when you're in the situation, do most people, have they filled out a donor card?

Does the family even know if the person has filled out a donor card?

- That is a great question.

We always advocate for families to start that conversation, start that conversation early, because it's about 50/50, the people that are registered and aren't registered in the hospital when that time comes.

And it always makes things so much easier to make that decision when families have had the conversation about donation.

- Larry, when your son passed away back in 2004, had you had any discussion with him about being an organ donor?

- We didn't have that bellwether conversation with him about donation.

We just knew it was something he'd want to do.

And the way he passed with an aortic dissection, he was not a candidate for organ donation, but he was eye bone and tissue donor and his donation touched 37 lives all across the country.

- Wow, that's fantastic.

And had you personally or your wife even thought about being donors or... - We were both registered to be donors, but it wasn't until after he passed, the doctor confirmed he passed away that we decided that he would want that and we wanted it.

- And you both really became advocates for organ donation after that?

- Yes, we did, we started volunteering with Gift of Hope and the Secretary of State and Eversight the eye bank in this area.

And we just found that to be something we could get involved in.

If he died of cancer, cancer association, heart, heart association, what do you do for a aortic dissection?

And we found this donation and it was our saving grace.

- Yeah, give you something not only to do good, but to maybe take your mind off things a little bit.

- Yeah, yep.

Out of such tragedy and sorrow, joy comes out of it.

- Your wife, unfortunately, she passed away pretty suddenly in 2023.

She became a donor after that.

- Yes, Vivian died of acute liver failure.

So she wasn't a candidate for organ or tissues, but the corneas are in that case would be recovered.

And I mentioned that to the doctor up at UIC in Chicago and they confirmed that she was a candidate.

- Yeah, I wanna talk about, you know, both of their legacies with you in just a few minutes.

But first, Shadaye tell us a little bit about, you know, the process from when somebody passes away until their organ or tissue, cornea or whatever is given to someone else, how does that work?

- Right, so first of all, when somebody comes into the hospital with a life-threatening injury, the emergency room doctors work as hard as they can and exhaust every opportunity available to them to try and save that person's life.

As we all know, sometimes that's not possible, but that's when those doctors take a step back and bring in Gift of Hope.

There's a clear separation of responsibility for what everybody's task is.

So, like I mentioned earlier, our donation liaisons are always on call in each of our service hospitals.

We work with over 180 hospitals in Illinois in Northwest Indiana.

And so the donation liaisons come in and have that conversation with the family after their loved one has been declared legally dead.

And at that point, once everyone has said yes to donation, then they sometimes have what they call an honor walk.

Did they do it?

- [Larry] No.

- They didn't do it at that time.

So they have an honor walk, which is where they line the hallways and the patient and soon to be donor will get taken to the operating room to recover whatever organs are necessary.

Each organ will be tested for viability before it's transplanted into its new owner.

And then once the organs are recovered, if that person is going to also be a tissue donor, they may go to either our Itasca or our Springfield location for tissue recovery as well.

And Gift of Hope covers all of that travel and all of the expenses responsible with that as well.

And then after that, they can go on to their funeral home of choice and have a normal funeral just like any other donor or deceased.

- So it doesn't sound like there's any additional burden being put on the family of the person who's... - None at all dominated, at at least very minimal, we try to get everything done as quickly as possible so that families can go on to their grieving process.

- One distinction with tissue as opposed to organ.

We didn't actually deal with somebody from Gift of Hope directly in the hospital because it was tissue, organs are much, they're not viable for long, so they need to get on that.

But we had phone interviews and that's how we did the tissue donation, but it's remarkable what they can do with tissues.

There's a young man in Bloomington-Normal killed several years ago in an accident, Michael Collins and his organs and tissues, it was over 100 people that he touched.

- [Mark] Wow.

- Through that donation.

- Well, speaking of that area, recently, unfortunately, we had a young man die as a result of a house fire at Edder Diaz.

And I know recently there was a run for him and Gift of Hope raised a flag at his school, Parkside Junior High.

When, I mean, obviously this is such an emotional topic for people, but when you see instances like this where a young man was able to help so many people with donations and things like that, does that help get the word out there for people when you're trying to get them to sign up to be donors?

- Sometimes, yes.

So we have a partnership with the IHSA here in Illinois, the Illinois High School Association.

So we go to a lot of championship games and we do show student athletes who died and became donors on all of our materials.

And so sometimes because it's so relatable, it hits home with some of the 16 and 17 year olds who are approaching making that decision for whether they're going to register.

And so them hearing, "Oh, I could save up to eight lives, I could enhance the lives of 75 or more people at the time of my death."

Sometimes that does help them to make that decision to say yes to donation.

- That reminds me, how old do you have to be to sign up to be a donor?

- 16 years old is when you can register.

- Okay, another thing I'm curious about when I was researching this was there seems to be some misinformation out there, some people who say they're against donation because they think that maybe their religion doesn't want them to be organ donors.

What can you tell us about that?

- That's a great question.

This month is actually Faith and Hope month for Gift of Hope.

And so this is a time when we work very closely with our different congregations and faith ministers to let everyone know that in the United States, every major religion does support organ donation.

And so we just encourage people to go to whoever the leader of their religious organization is and have that conversation with them.

- Okay.

And I'm curious, you know this question for both of you.

When you're out there and you're telling people about organ donation, if you get any pushback at all, what is it?

I mean, what are people maybe afraid of or don't understand about... - Typically it's what are called myths.

Like you alluded to one.

People, they're not gonna take care of me in the ER because if somebody needs an organ, and that is totally false, everybody at that hospital is committed to saving the life.

So that's a misconception.

And she mentioned the religious thing and there are no, as she said, no major religions are against it.

So that's kinda some of the pushback we get on it.

And I've usually been able to convince them that you need to sign up.

- [Mark] Sure.

- There's a bookmark, I got an old one that says, "Don't take your organs to heaven, heaven knows we need 'em here."

- [Shadaye] Oh, I love that.

- Yeah.

- Another misconception is that people will say, "Oh, I'm too old or I've been sick, I've had this, that, or whatever sickness."

There is no bearing on your race, your age, religion, any of those demographics when it comes to organ and tissue donation.

We always tell people, "If your intent is to be a donor, register as a donor and then let doctors figure out what will be medically viable for transplant."

- Sure, and it sounds like it's a, you know, a case by case basis.

- Absolutely.

- You mentioned that your wife's organs weren't eligible, but other things were, and so it's just a matter of the doctors saying, "Okay, here's what that person might've been afflicted with and here's what we can do."

Another thing I read too, some people worried about if they donated organs, they couldn't have an open casket at the funeral.

Does that have any impact on anything?

- Absolutely not.

- Okay.

- Yep.

- Good to know.

Larry, can you tell us a little bit more, we're gonna talk about a very cool thing that an organization is honoring your wife.

We'll talk about that in a minute, but can you tell us about some of the work that you've done and your wife did after your son's death as far as trying to get the word out there about organ donation?

- Yes, John passed away on October 11th of '04.

And we found a Gift of Hope that next spring they were pushing to get the law passed for first person consent.

Prior to that it was, you register and then you have to get permission of the family with first person consent, your consenting to it.

So I helped, well I wrote papers all across the state and I volunteered to promote that.

And one of our first trips up to Gift of Hope, we were in Dave Bosch's office.

He was the head of communications when the legislature passed it.

So it was gonna become law that next January.

And that was a big step.

But then after that, we did anything and everything we could to promote donation, traveled all over the state.

It was our saving grace really with the loss of John.

So, everything from health fairs to presentations to funeral home directors, coroners, really anybody that would listen.

And it was a good way for us to introduce people to John.

- Sure.

And it seems like the Secretary of State's office is really proactive about trying to get people to sign up to be organ donors.

Do you work with them in terms of that kinda thing?

- Yep, absolutely.

They have a program called Life Goes On, and it's very similar to our community outreach program at Gift of Hope.

And so a lot of times we work very closely together and like especially at our IHSA events or we have a partnership with the Illinois High School and College Driver's Education Association.

And so we'll partner and work together there and then we do the state fair parade together as well to help spread awareness.

- And I mean the numbers, you know, you mentioned more than a hundred thousand people in the country waiting on a transplant every eight minutes another person's added to the waiting list.

13 people pass away every day waiting for an organ transplant.

In terms of, I guess let's just talk about Illinois.

Even if everyone, you know, who is 16 and above signed up to be an organ donor, tell us about the process in terms of, okay, you have this many people needing an organ, this many people willing to give one, what's not meshing there?

- Yep, so organ donation is very rare occurrence.

So you must pass away in a hospital setting on a ventilator.

So only 3% of deaths that occur in a hospital reoccur that way.

So that's why it's such a rare opportunity for a donation.

And so many people die every day waiting.

Only about 60% of our population are even registered to be organ donors.

And so then only 3% of those are gonna go on to be donors, which is why we try to encourage more and more people to register so that there's more people to approach for donation.

- And I guess another thing on that waiting list, the majority of the people nationwide need a kidney.

- Right.

- Above any other organ by far.

- Yes.

- And I guess not everyone is eligible to donate a kidney in that respect.

I mean, there's not enough people... - Right, there's not enough... - If you donate to give all these folks a new kidney.

- Right, so there's not enough folks passing away in a hospital setting in order to donate kidneys.

But one of the great thing about kidney donation is that it can be done while still living.

So that is one of the things that I talk about in my presentations as well, is how the process of living donation goes and how you can do all of the same things you did before your living kidney donation after you donate a kidney.

- It's called share your spare.

- Share your spare that's very good.

Larry, tell us about some of the other things you've done.

I know you've worked with Camp Dallas who we just interviewed here a few weeks ago, but it seems to have done you a lot of good to be able to spread the word about organ donation.

- Yes, it has.

A few months, I'll give you an example.

A few months after John died, he was at Lincoln Land Community College in Springfield.

And the person that works with student groups, he was really good friends with her and she passed away and we got a note from her husband saying that she became a donor 'cause she heard John's story.

- Well, I mean it's saved lives.

- Yeah, sure.

- That's undeniable.

- Yeah and we've run into several situations where people have actually met their donors.

We have not met the recipients yet.

We did in a very rare occurrence in like 2005 or '06.

We heard from a staff sergeant in the military, they got a rebuilt knee from John's donation and John would be very, very proud of that.

- Well that's great.

And it's probably something people don't think about often.

They think about lifesaving organs, but there's things like the corneas, the knees that improve people's lives.

- Yes.

- Yes.

- Yeah, this is such a painful topic and I appreciate you coming and... - Oh, no problem.

- And talking to us what it's all about.

What can people do Shadaye if they're interested in this subject and maybe they are an organ donor, but that's not something they're gonna have to deal with for a few years.

What else can they do or do you ever look for volunteers or people that speak in the community?

- Absolutely.

If they, especially if they have a connection to donation, we always say no one can tell the story of organ donation better than a donor family or someone who has received an organ themselves or a tissue themselves.

But beyond that, if there are people who are just passionate about organ donation and wanna spread the word, I am always looking for volunteers.

We serve such a large state and I especially, I do, I cover everything below I-80.

So I'm always looking for people to come out to events and help me.

I'm only one person on a team of four in total.

So anytime we can get a volunteer to help us to talk to students, especially in minoritized communities that might not be getting the education, it's always helpful.

- Do you see a lower donation rate from minority communities?

- Absolutely.

- Is that mostly just 'cause of education on topic?

- There's a lack of education.

There's some health disparities that have historically happened in our country that we must address in order to build trust in those communities.

But I see more and more those communities getting educated and continuing to build the trust.

So we just have to keep going with that.

- And is it pretty easy to sign up to be a donor?

- Absolutely.

- I mean, I remember when I did it, it was just basically sign the back of your driver's license.

I don't know if they still do it.

- Yeah, you don't the back of your driver's license anymore, but you just say yes when they ask you at the DMV or you can go to giftofhope.org and click Register Now.

If you live in Illinois, it has the option for Illinois.

If you live in Indiana, it has the option for Indiana.

If you live anywhere else in the country, it also has the option for that.

And there is a national registry as well that you can get registered on if you think you might move around the country.

Often you can register on the national registry and be covered in all 50 states.

- We mentioned a little bit earlier that a 13-year-old, Edder Diaz a passed away but was an organ donor.

And I know besides the fundraiser that they had, Rudder for Edder and the cross country run, that Gift of Hope was there and actually raised a flag.

Tell us about things like that, that Gift of Hope does.

- Yeah, so anyone can request a flag raising.

We have a team called Donor Family Services and they work with families after donation and help do things to keep those donor families connected And to continue leaving a legacy for their loved ones.

So flag raisings are one of the ways that we do that.

We'll be doing another flag raising out at Porta later on this year, or actually in 2026, early 2026, we'll be doing a flag raising out there for another young man who unfortunately lost his life and became a donor.

And it's a pretty easy process.

Most donor families know who their donor family services liaison is, but if not, they can always and go to our website, giftofhope.org and request a flag raising.

- The other critical thing is when you register, be a donor, talk to your family and let 'em know, it makes it easier on them if you pass, yeah.

- Yeah.

Larry, let's talk a little bit about a very cool thing that's happening on New Year's Day.

- Yes.

- Out in beautiful Pasadena, California.

All right.

The OPO, Organ Procurement Organization in LA is one legacy.

And in 2012, I mentioned that Gift of Hope honored us with... Vivian got to ride on the float carrying a picture of John.

And the suing years after that, we lucked out and got on the committee.

So for six years we went out there every year for the Donate Life Float and we're in charge of transportation for him.

But it was to see her going down Colorado Boulevard carrying a picture of John was very touching.

It was in incredibly moving and healing.

So, we loved promoting donation.

And after John died and when Vivian died, I was hoping she could be a donor.

She died of acute liver failure, which precludes organs and probably tissues.

But I talked to the doctor and I said, "I wanna make sure the corneas are offered."

And they were and she was a candidate for transplanting of her corneas.

And about a month after, or a few weeks after she passed the head of Eversight called and said that she was worried about telling me this, but one of the corneas didn't work in the person it went into, which is a part of the whole donation process.

Sometimes it doesn't work out.

She was worried I'd be very upset about it and I wasn't.

I'm just sad for the guy that it didn't work for the gentleman that it didn't work for.

- Yeah.

- Sure.

Well, tell us about this unique object that we have here and what's going on New Year's Day.

- So in the Rose Bowl Parade, the granddaddy of them all.

In 2004, a gentleman that was a double lung recipient sent a letter to One Legacy and said, "Why don't we have a Donate Life float?"

So in 2004 was the first Donate Life Float and it's been growing ever since then.

And they have different themes each year it's tagged off of the theme for the parade itself.

And then there's an artist that designs it and they start building it in March, the structure 'cause you gotta put a vehicle underneath that thing.

And then through the year they finish it off.

And then starting in October is when they'll start doing the serious decoration with materials that don't deteriorate.

And one of the things that they do is a flora graph.

Think of the term floral photograph, flora graph.

And that's what this is.

They print the picture on the paper and then my daughter and granddaughter and Vivian's sister went out to LA and we decorated this.

And it's all done with... Most of it is farina with some coffee and some espresso in it for the darker parts.

But it's just a labor of love.

When Vivian died on the 31st and our daughter was eight and a half months pregnant, 23 days later she had twins.

So this was very good for her.

- Oh yeah, it looks beautiful.

And like you said, anything you can do to help with the healing.

- I'll claim that I did some of the areas without a lot to it.

My daughter and granddaughter, but mostly my daughter did the shading.

- Well it looks fantastic, yeah.

Well, before we go, give us your website again so if people wanna learn more about organ donation, they can do that.

- Yep, it's giftofhope.org.

- All right.

Larry Leffert, thanks for coming in buddy.

- Well thank you, I appreciate it very much.

- We appreciate your story.

And shadaye, I thank you for coming in again.

- Absolutely.

- Go to that website if you want to learn more and look for that float on New Year's Day.

We appreciate you joining us tonight and you can check us out anytime on Facebook and Instagram.

Go to wtvp.org if you wanna watch this interview again and share it on social media.

Have a good night.

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