Hope Thru Grief features co-hosts Marshall Adler & Steve Smelski discussing their journeys of grief, after losing their sons and other family members. They have changed their focus in life since their son’s deaths and have been helping others to find the support and answers they have been searching for.

Steve and his wife, Shelly, had an ideal life with successful careers and an 11-year old son, Jordan. A day after returning from a summer vacation spent splashing in hot springs and ziplining in Costa Rica, Jordan became ill with a severe headache. Within a few days, Jordan passed away from what the doctors discovered was a brain eating amoeba that he had contracted while on vacation. There are no words to describe parents that have lost their child and Steve and Shelly’s grief seemed insurmountable- at times even forgetting to eat. The Smelski’s have dedicated their lives to fighting the brain eating amoeba and started the Jordan Smelski Foundation in their son’s honor. They hold an annual Amoeba Summit in Orlando, FL and create training courses for doctors and lab technicians which have been instrumental in saving at least 3 children with confirmed PAM cases, so far.

Find out how Steve and Shelly have found hope and the strength to fight the very disease that took Jordan from them far too soon.

We welcome your comments and questions! Send an email to hopethrugrief@gmail.com and please share our show with anyone you know that is struggling with loss and grief. You can find us on the internet to continue the conversation!

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Jordan Smelski Foundation: http://www.jordansmelskifoundation.org

Tune in for new episodes every Thursday morning wherever you listen to podcasts! 

Marshall Adler and Steve Smelski, co-hosts of Hope Thru Grief are not medical, or mental health professionals, therefore we cannot and will not give any medical, or mental health advice. If you, or anyone you know needs medical or mental health treatment, please contact a medical or mental health professional immediately.

Thank you

Marshall Adler

Steve Smelski

My name is Steve Smelski welcome today to hope through grief.

Thank you for joining us today.

We're going to go into Jordan's and mine and my wife.

Shelley's story a little bit and talk about some of the background.

In the meantime, I'd like to introduce you to cohost Marshall Adler.

Thank you so much, Steve.

I'm glad that, uh, we are going to get an opportunity today to have you tell

us about your journey with the loss of Jordan and your wonderful wife Shelley.

So what I'd like to do is if you could please tell us about Jordan, I think

that'd be the best place to start.

Okay.

Jordan is Shelly's and mine only child.

He passed away when he was 11 and a half.

He had graduated fifth grade was getting ready to go into middle school.

After some of vacation, Jordan was a 100%, 100 mile an hour boy from

the moment he woke up to the moment he fell asleep, he was all go.

He was all in on everything he did.

Jordan liked to go first.

He always liked to win.

He was actually very talented, uh, artistically, he, his paintings

and colorings were very vivid.

Uh, he was actually a very good writer.

We didn't realize how good until we went back and read some of the things

that he had written, uh, after his passing, he was pretty good in school.

I think he got the good grades for us, for him.

He could take it or leave it.

But, um, he knew that made us proud of him.

So he tried really hard on the grade side.

Sports-wise he was, he was pretty athletic.

He played soccer for seven or eight years.

He played baseball for a couple of years.

Um, he also played some flag football.

Um, Besides being a hundred miles an hour, an all boy, Jordan really

wasn't scared of much outside of maybe spiders and snakes and alligators.

He, um, he was the catcher on the baseball team because he was the

only one in the team that wasn't afraid to get hit by the ball.

On the soccer team, he was the goalie because he would lay right out.

He'd take one off his head to keep it from going in the goal.

He just, he had no fear, which as a parent, it scared us many, many times.

He loved to swim.

He learned to swim before he was two.

Uh, he started taking swimming lessons about a year and a half.

And within six months he was off on his own with no floaters in the pool.

We were a little concerned with all the drownings in Florida and want

to make sure he knew how to swim.

He loved swimming.

We, uh, we lived on a lake and we wanted to make sure that he

was able to swim if he needed to.

But we also asked him not to go in to the water.

He loved his friends.

He loved playing games with them.

He'd laugh and talk with them all the time.

He was always trying to tell a joke to make you laugh.

Uh, sometimes he'd say it too many times and we'd have to say,

okay, Jordan, that is not funny.

You're going to forget a different joke, but he, um, He loved

going on vacations with us.

He loved hanging out with us.

We went and he was actually very well-traveled.

We, uh, call ourselves the three Amigos.

And when we took off and we traveled to a different country and, um, he

was very passionate about his video games and playing with his friends

and spending time with his cousins.

And he, uh, he always had a good time and you'd hear the kids laughing.

And Jordan was in the middle of, because he's trying to make everybody

laugh, but, um, he was all boy and he was all ours and, um, he could be a

challenge, but, um, Shelly and I were both in sales and Jordan would try to

sell you on all his ideas and wishes.

His fifth grade teacher, Ms.

Charlton told Jordan he should go into sales because he'd be a good one.

He'd always have an angle on something he'd always try and talk

you into doing something his way.

But, um, actually we really miss him.

What happened on your vacation in June, 2014?

That was the summer after he graduated fifth

grade from Wilson elementary.

And we were trying to determine where to go.

We usually took one very nice vacation over the summer when he was off from

school and we had a couple of things fall through and we asked him if he wanted

to go back to Costa Rica, because we had been there in 2011 when he was eight.

And he said, yes, he loved, uh, riding the horses.

He loved holding the Toucans.

So he was all in.

So we scheduled a vacation, ended up staying at the same resorts

that we did the first time.

And didn't really give it a thought.

We weren't really concerned.

First time we checked into everything, we were really concerned.

First time we'd ever been there and we had such a great trip

and the people were so friendly.

We weren't really concerned when we left and went down in 2014, we ended up staying

now where there nine days, eight nights, and we stayed at two different resorts.

We did a lot of different things.

We did a lot of hiking.

We did horseback riding, but we only swam one day.

And Jordan and I spent the afternoon in the pool for six or seven

hours going down a water slide.

And the resort was near a volcano and it had hot spring water

and probably half of the pools.

Well, the pool with a water slide was filled the hot spring water.

So it was like 96 degrees.

And he, I spent the whole afternoon, he, he wore me out and five or six other

people, he just kept going down the slide, but you couldn't go down the slide

without having all the water splash up in your face and go up your nose.

And he and I had a great day.

In fact, as a father and son, I might've been one of the

best days we ever had together.

It was just he and I in the pool for the whole afternoon.

And, um, I think we got there at noon and we left the little

bit after six, went back, took a shower and met Shelly at the room.

And we, we went out to dinner at their five star restaurant there at the resort.

And, um, he ended up having a headache the next day, but we left

that resort one in the San Jose.

It didn't feel as good the next day.

And we flew back on Friday.

So we swam on Tuesday and flew back to Orlando on Friday.

What happened after you got back to Orlando?

We flew into Orlando.

I think we, we spent three hours in customs because there was a thunder and

lightening storm right after we landed and they couldn't unload the luggage.

So we waited an awful long time and he kept complaining about a headache.

Uh, hadn't gone away since we swam.

And I thought maybe he twisted his neck or pinched a nerve in

his back from going down the slide with all the stunts he was doing.

We ended up picking up, take out.

Um, he woke up the next morning.

He seemed a little better.

He ended up playing his games all morning.

He asked us if he could have his best friend Jaden over to play games with them.

And we said, ah, you're not feeling that good.

We just got back.

We'd been out of the country.

It's a good day to rest up.

You'll have a chance to play with him all summer long.

So.

He, um, play it up until about noon and by one o'clock he was laying

on his bed and complaining that his, his neck was getting stiff.

He still had a headache and you just didn't feel good.

As soon as he said, he didn't want to play games.

We knew something was up because if he had a chance to play,

he'd just sit there and play.

We ended up having dinner that night, watched a movie, Shelley put him to bed.

And about 1130 Saturday night, he, he started vomiting and

he was up all night long.

And Shelly woke me up part way through the night I got up and saved

rather than the rest of the morning.

And she goes, I'm concerned.

He's you just getting sick?

And he can't stop.

And we said, if he's like that in the morning, we'll take them

to the emergency room, especially since we've been out of country.

So she came in to check in the morning and he was still vomiting.

He'd been up like every 20 or 30 minutes.

And, uh, neither one of us got much sleep.

We got ready and took him to the emergency room.

Um, talk to the doctor.

We told him we'd been out of country.

And, uh, he asked, you know, where you around farms are around animals.

And we said, yeah, we've been around all of that.

We'd gone horseback riding.

We'd also gone swimming at the pool and he'd had the

headache after we were swimming.

So they said, well, the stiff neck leads us to think that it's probably meningitis.

So we'd like to do a CT scan.

And the only way we'll know for sure is do a lumbar puncture and check

the CSF fluid from the spinal column.

So gave him the okay to do both.

Both of them came back good to CSF fluid was clear.

His CT scan came back fine.

There was no issues.

And, um, they said, we're going to transfer him down to the

children's hospital and we'll go ahead and admit him down there.

So they transferred him via ambulance and put them in a regular room.

He had a tough night.

He doesn't feel that good, uh, the next day, other than not being able to keep

anything down, they had him on medication.

So he wasn't, wasn't getting sick anymore, but they wouldn't let

him have any fluids or any food.

He really wanted to have a drink, of a Coke.

And they were like, no, you can't drink anything.

But he and I, how we, I laid on his bed.

And we talked about the vacation, different things that we're going

to do for the summer, maybe where the next vacation was going to be.

And it seemed like he was going to be just fine when they checked him in, they

said it's viral meningitis and you'll take them home in three to five days.

And by the next day it was like, yeah.

Okay.

This is awesome.

We'll be here for a couple of days and we'll go home.

Well, Monday night he started hallucinating and Shelly and I laid on

his bed on top of him because after the first half hour, he was seeing things

on the ceiling, seeing things on the bed, and then his body started shaking.

He couldn't keep his arms or his legs still.

And they had a couple of IVs and.

And so we ended up laying on top of him for three to three and a half hours.

Cause we couldn't get the nurse to bring a doctor in and his pupil's dilated.

It was just like you go to the eye doctor and have a test, huge pupils.

and he was looking really weird and he was saying things that didn't make sense.

And then as the three and a half hours went on, he said less and less.

And at the end he was just shaking uncontrollably on the

bed with us on top of him.

And he didn't know who we were he didn't recognize us.

He didn't know where he was.

So they finally brought the ICU team in and just as they came in the door, he

had a seizure and he rolled over on his side and they wheeled him down to ICU.

They got him stable and they said, okay, we've got them stable.

He's going to be okay.

It's going to be two to three weeks.

And then the next night it got even worse.

They were worried about the swelling in the cranium.

And they were worried the brain who pushed down on the brainstem,

which would kill Jordan.

So we gave him approval to have a neurosurgeon drill, a little hole

in the top of his skull for a drain.

And in that CSF sample, they saw the movement of the amoeba

and they reached out to the CDC.

They had a special drug that they've been using in the last few cases.

And they put it on a flight to Orlando.

Jordan didn't make it until the drug got there.

He passed away at 6:35, Wednesday morning, seven and a half days after we swim.

And, um, I think the flight from the CDC from Atlanta arrived about

eight and he passed away at 6:35 AM.

How did you deal with your grief, seeing your son.

Go through this.

Like, I I'll just interject that when Matt passed away, he was 3000

miles away and we got a call from the medical examiner, which was something

I'll never forget, which was its own horrible way to learn about the passing.

But you were there watching this happen.

I mean, how did you deal with your grief after this?

The morning, he passed away.

They had told us to try and get some sleep.

Cause we'd been up straight for pretty much three days and they woke us up early.

I think we've got an hour, hour and a half sleep.

And they said, look, we can't keep his vitals high enough to

save him until the drug gets here.

We need you to make a decision whether you want us to manually

resuscitate him until the drug routes.

And we hadn't had much sleep and they're asking us to make that decision.

And so Shelly called her a couple of her family members.

I call my parents, my mom was a nurse and labor and delivery.

And, um, she said, Steven, we, we can't tell you what to do with that decision.

You guys have to make that.

And Shelly got the same answer.

So we asked the doctor, if it was your son, would you do it?

And he said, no.

During the process of the last 24 hours, Jordan's left lung had

collapsed because of the intubation that it was, uh, as an adult.

Intubate Bayshore machine.

And it was too much pressure and it collapsed his left lung.

So we knew we were going to have some lung issues and pneumonia issues

and the thought of them pressing on his chest until the drug got here.

We just, we said, no.

So we called our family members and said, you need to come right away.

And within 30 minutes we had eight of our family members and friends there.

And.

I was on Jordan's left side right side with his right hand show is on his left.

And she asked everybody in the room.

Does anybody disagree with the decision we're making to let them go?

If, if you disagree, please say so right now.

And nobody said a word.

So they took him off of the respirator and we waited maybe two minutes and he

stopped breathing and I checked his heart and he was gone and we held his hands

for a few minutes and gave him a hug and we let everybody else have a turn.

And, uh, within 20 minutes we were ready to go out of the room.

We didn't want to be there.

So we went next door, got our things and we left by the time the doctor

came back, I guess we looked around and you guys were already gone.

We're like, we just couldn't stay there.

So we went home, we had a bunch of people at the house.

And even though your mind saw it, your heart won't let it be true.

We, um, we were in shock for the funeral service actually were probably

about 10 days, but we did a second service in New York and we would just

come out of shock and it was awful.

We, we thought we'd made a mistake flying up.

We didn't want to be around people.

We didn't want to go out of the house.

We didn't, um, we didn't want to do much at all.

We just couldn't believe he was gone.

And it just, it just seems so surreal that we had just been through that week after

the best vacation we'd ever had together.

And it happens so quick.

You don't really have time to let it sink in.

We didn't know he wasn't gonna make it until they woke us

up in the morning he died.

Cause we were still thinking the drug was going to save him.

The CEO of our company called us that night in ICU and offered up his plane

to fly in any drug or any doctor that we needed and reached out to

Stanford University to get a doctor from there and touch with our doctor.

And as it turned out, nothing would have changed the outcome, the, um,

the initial diagnosis, um, based on what Jordan died from is fatal.

They don't have time to go back and make a change until things don't make sense.

It's too late.

There's no way to save the patient.

So we had family stay with us for a couple of weeks.

And then all of a sudden, you wake up one day and they're gone and you're in the

house and it's so quiet without Jordan.

And you're thinking that I can't stay here.

This is horrible.

And yet you don't want to go outside.

You don't want people to talk to you.

You don't want them to run into you.

We had a lot of phone calls and a lot of text messages.

Sometimes it was four or five days before it could call him back.

It was, I guess we were in denial for a while because it seemed

like the first four or five months that we were at the house.

Every time the front doorbell rang, we thought it was Jordan and

we'd run to the door and then you go, that's not going to happen.

He's gone.

So we, um, decided that we need to get some help.

And we went to see a counselor for almost four months.

And we didn't feel like we were getting any better.

We ended up meeting one of the pastors from one of the nearby churches and he

told us about a grief program, his church.

And we signed up because we knew were in trouble and we weren't right away.

We came in, in the middle of the program and from the videos

and stuff, it seemed to help.

So we signed back up when they started up after the first of the year.

And we were still struggling.

I mean, every day was a struggle and it seemed like for the first two weeks,

Shelly and I were on the same page when she was having a bad time, I knew it.

I would go to her and same with, I was having a bad moment.

She come after the first two weeks, it was completely different.

We had no idea that men and women grieve differently.

We had no idea that everybody has a different journey of grief.

And at first we're like, okay, what's wrong with us?

Why are, why aren't we feeling the same thing?

So we started through the program and we, um, made some progress.

So we signed up for a third time and it felt better and better, but we

still had a hard time accepting it.

So we went to sign up for a fourth time and they said, well, You can sign

up, but you're going to have to help.

So I guess they thought we were better and we were like, we can't help anybody.

And they're like, we think he can.

What made you decide to help others?

Because I will tell you that you were so instrumental in helping us through

our grief process and I mentioned before to this many times to many

people publicly that you have been a shining example for me and Debbie, how

to survive the loss of a child and how to lead a productive, meaningful life.

So I'm really interested in the thought process that you came through

to make you decide that you wanted to help others after this tragedy?

I think by signing up to go through the grief program

early, no, it was two and a half to three months after Jordan's passing.

I think that was a help because we realized for the first time, since he was

gone, that maybe there was hope for us.

We could see maybe a light down the road, somewhere that

we could pull things together.

Your brain is mush and it is so difficult to concentrate on anything.

Our attention span was two minutes.

I wish I had a dollar for every time I lost my car keys.

It was that bad.

I mean, sometimes I'd find the car keys in the freezer.

I'd find them in the garage on top of a garbage can, just crazy thing.

And I think once you start to feel a little bit better, it's like, you're

you gravitate to it because anything is better than where you were at.

And you're not even 5% of what you used to be and any chance that you

might get back to what you were before, that's very attractive.

So you gravitate towards it.

Right after Jordan died, my sister-in-law was here and she found a couple family

sites on the web for amoeba awareness.

Jordan died from Naegleria Fowleri, which the press calls the brain

eating amoeba, which is pretty much exactly what it does when Jordan died.

It was 99% fatal, which means if your kid gets it, they're going to die.

There's pretty much, no chances only been a handful of survivors.

And about two months into our grief.

Before we started the program, we realized that we didn't want

anybody else to go through this.

And we thought all these families have these websites, but we'd

never heard of it before.

We'd never seen the websites before.

And it's like, maybe we could do it.

We had no idea how to start a, not for profit and.

Some of our closest friends and family members helped us pull it off and we

set it up and we asked the, I think we had four of our closest friends

that we thought could be influential on the board to be board members.

And they said, yeah, she, when we started, it took us four or five months to meet

with the different hospital systems.

We basically did a David Letterman top 10 list.

And we said, this is what happened to Jordan.

We think every one of these assets has to change.

And if we don't change it, the next patient's going to die too.

We found out Jordan wasn't the first case.

He was the fourth.

Okay.

So if you do nothing, outcome's going to be the same.

Well, we met with Dr.

Rajan Wadhawan and he was fairly new as the chief medical officer

and he agreed to meet with us and we made a few requests and suggestions

and he worked with us and, um, we started out wanting to do awareness.

And at the same time, we're going through this grief program to teach

us about our loss and our grief and the different steps in the stages, the

different things that you're going to feel it, we couldn't understand as we

started through our grief process, why.

Some of the things we were feeling, we felt like we got over him and then

two or three weeks later, they came back and they're actually stronger the

second time until they start explaining that it's like being at the ocean and

a set of waves coming in, the waves can knock you over, but it's not constant.

You can get back up, get back on your feet and wait for the next one to hit

you until they explained it that way.

We thought we were going crazy because.

It was like, man, I just got through that and now I'm going back through it.

I don't understand what's wrong with me.

Anger would come up and it kept coming back and coming back, came

back like four or five times for me.

I was angry about what had happened with Jordan.

So we're going through the program, learning and feeling like we're, I'll

say crawling for, because you don't run.

You certainly don't even walk many times you fall down at the same time,

we're working with our friends to come up with the idea of not having

any other families go through it.

And, um, after the second time through the grief program, we came up with

the idea of changing how healthcare deals with what Jordan died from.

And so he approached Dr.

Wadhawan we worked with the health departments in

Orange and Seminole counties.

We reached out to the CDC.

We reached out to several different experts around the U S and we

came up with a meeting that we held in September of 2015.

And we brought in the experts and we did a program Shelley and I

didn't even know what we're doing.

It was like, we were leaning on everybody else, but we got up and

we shared, and we cried and we told them why it had to change.

And they all got behind us and they started working well from that first

summit some of the things we came up with and the education and some of

the training actually led to the next boy that came through the hospital

from South Florida, he came up to the theme park, ended up at the hospital.

He swam in South Florida.

He actually lived.

And at that point we realized that we actually might be

able to make a difference.

So while everybody else focused on awareness, we focused on

the ones who actually got it.

Um, based on Sebastian's outcome, we put together a training video

to train other health care lab technicians on how to identify quickly.

Cause there is no early detection test.

So if you misdiagnose it or you don't consider this, the patient dies

because by the time you figured the damage is done and the patient won't

live, that's why it's 99% fatal.

So we put together a training video, which has been shared,

it's been shared in Spain.

And two years ago, there was a 10 year old girl that lived in Spain and the

doctor at the hospital that we've worked with he shared it with all of his people.

He actually went and identified the girl's case and he had watched

the video and the girl lived.

And then we realized that we really could influence something that nobody

had ever taken the approach with.

But I think it took a parent who lost two parents that have lost

a child as their motivation.

To not take no for an answer.

I mean, we get turned down all the time, but we don't quit.

In the meantime, we've continued to do the grief program and they

eventually ask us to help facilitate.

And we actually got healing from helping others.

I know it seems strange, but you get to the point where.

You're on your feet.

You don't fall down as much, but helping somebody else and helping them go from

where you were, where you are completely non-functional, couldn't stand on your

own and to be able to come out and finally smile after five or six months.

I mean, it almost felt like you weren't supposed to smile anymore because I've

got all this pain and grief to watch somebody else come through the program

where you were, and then ended up where.

They give you a hug and say, thank you.

And so I don't know what I would have done.

I'll do it the rest of my life.

It is very healing to be able to help them.

And you know, they're going to help somebody else.

It's amazing how many people we've talked through that came through the program.

They said, you know, I've had three or four people reach out to me.

And I, I actually.

I know what to say or to do or how to maybe just listen.

But until you get in that situation, I'm not sure you ever know how you

can help somebody or what you can say or what you could even do for them.

Shelly and I used to avoid people because we weren't sure what to say to him.

And I remember going to the, to the grocery store and I see somebody

in the first aisle there at the far end, I said, Oh, I'll meet him.

When I get around to the next aisle.

I look and I look, and I look to get the far end and they're gone.

And then I realized they didn't know what to say to us.

So being associated with a program that meets fairly regularly, I think

we're doing 32 weeks out of the year.

We're in touch with people who understand they get it.

They know where we're at because they're a little bit further behind us.

We had a few people that led us that are a little bit ahead of us and

to take all the extra energy that we've gotten and put it into the

foundation towards changing outcomes.

That's very, that feels good as well.

It feels like you're not, I don't think we've ever gotten back to the point

of where we were before Jordan died.

I, those people are gone.

They both died with Jordan.

I don't think were as sharp mentally.

I don't think we can stay as focused all the time, but it actually

felt good to accomplish something that nobody else had ever done.

And I remember thinking, okay, we are never going to be able to do anything.

We don't know what, we're not doctors, we don't know what's going on yet.

We started raising questions that nobody had ever addressed before,

and they were common sense questions.

And we saw exactly what Jordan went through and we were

like, that's got to change.

So we've worked with doctors from around the U S this past summit we

had in September, we had I think we had 24 doctors come in from 10

universities around the University of Washington, Clemson, University

of Georgia, Duke, Yale, UCF, USF, San Diego, and Northeastern.

And we met with all the doctors.

We did a day two, and we talked about part of the problem with this disease.

Primary Amoebic Meningoencephalitis is there's no early detection tests and

there's no drug made for this treatment.

And so we've been supporting them because they got some brilliant minds and they

may be able to come up with something that could actually save more lives.

So we've tried to stay focused on both things that helps us

personally to help others.

And it certainly helps knowing that we might change outcomes

from what Jordan died from.

Our initial goal was to make sure that we could come up with a process

for saving a patient with PAM.

So Jordan would have lived.

And we actually did that in less than two years because Sebastian

came into the same hospital.

Then we had the girl a couple of years ago in Spain who dr.

Lorenzo Miralis had actually worked with us well, because we shared the

information with him last year, I think it was a week before Thanksgiving, they

had, a free-living amoebas conference.

They call it FLA 2019.

And the doctor that we funded research for at Virginia

Commonwealth University, uh, Dr.

Francine Marsianno Carrboro.

She actually started this international conference 38 years

ago, and every two years they traveled to a different country.

And a lot of these have doctors have been to all of them, all 19 conferences.

And I met a couple doctors from Germany and this was their 19th conference.

Well, they invited us to go.

And then the conference was in Costa Rica and Shelly and I had said we would,

we would never go back to Costa Rica.

And Dr.

Morales reached out to us and said that they'd like to dedicate Wednesday

of the conference week to Jordan.

It was Naegleria Fowleri day and it was in Costa Rica and then they wanted

a debt and they wanted our permission.

So we talked about it and went to bed and we got up in the morning

and we both had the same response because I said to Shelly, I said,

what do you think we should do?

And she said, I think we should go.

But I think we should ask him if we can speak to the group.

And I smiled because that's exactly what I was going to say.

So we told them yes, they were estatic.

He contacted the team in Costa Rica and they were phenomenal.

And so Shelly and I went down with their board of directors.

The week before Thanksgiving, we ended up doing an interview while we're there in

Costa Rica and it played the whole week.

We were there on national TV, the cab driver to Subutex back to the airport.

He goes, Steve, I've been watching you on TV all week.

Well, it was a great conference.

We met a lot of different researchers from around the world, some great contacts.

We talked about the things that we were focused on and the two doctors that were

from the University of Costa Rica they, um, they were involved in a PAM case.

So at the time, Jordan.

Was the only confirmed case of PAM in Costa Rica.

They'd never had another PAM case.

In fact, I think they questioned whether he was infected there.

Cause they're all the cases in Florida.

Well, because of us going back, uh, Dr.

Lorenzo Miralis did an interview in Spanish and I did the one in

English and talked about what we were trying to do and talked about.

Jordan had some pictures of Jordan that we gave them.

Well, December 28th, 2019, a boy was diagnosed with PAM.

The same thing that Jordan was infected with Dr.

Miralis reached out to me and I go, wow, that's awesome.

How did it happen?

And he said, Steve, I asked the doctor and he said, I found out about it

from the Jordan Smelski Foundation on the interview at Thanksgiving time.

And then they didn't have the drug that they needed.

And they started treatment early.

The boy ended up passing away on January 9th of this year, but he

was now the second confirmed case and the drug wasn't in country.

Hadn't gone through customs, but they got it right near the end.

We actually spoke with his mom.

The boy who was his name was Jose.

And he was 15 years old, met with his mom and spoke with her.

One of our board members speaks fluent Spanish.

So he, he did both ways translations for us so we could communicate.

And she struggled just like we did all the same things.

So she's reached out to us a few times, but three weeks after that, Dr.

Miralis has let me know there been another case in Costa Rica

and it was a four year old girl.

Well, this two doctors who held the conference, identified it in

that case, they were aware of it because of Jose's case in December.

And she actually got what was left of Jose's drug and she lived,

and that was just in, that was like February 14th of this year.

So those are the type of things to keep you going.

Those are the types of things that you want to give back on.

Will it continue to help on the group side of it and we've started

to realize that we can make a difference and we can reach out.

It just takes an effort on our part to put ourselves out there and you never

know what's going to come out of it.

So we'll continue to help others because it's helpful to us and people did it

to help us get to where we're at today.

There's a old saying the Jewish religion that

says that if you save one life, it's like you save the entire world.

And you've already done that by changing the protocol, medically is

amazing that you've taken your grief and literally saved lives with it.

So the good work that Jordan did when he was on this earth, you and Shelly

are continuing, which is incredible.

And I'll tell you, I went to the 2019 summit that you put on here in

Orlando, Florida, Florida Hiospital.

Well, I was just amazed by the high level of organization, medical experts,

cutting edge technology and research they were doing because of you and Shelly.

It was, it was phenomenal.

It really was.

I was just blown away by it.

Oh thanks

And you know, every death is due to a medical reason, whether

it's an amoeba or heart attack, stroke, mental illness, it's a medical reason.

And throughout history, it's been a battle to figure out why that

happened, what we can do about it.

And obviously you and Shelly have really changed the course of medical

history with this amoeba, which again is like saving the world.

It really is

We've had an awful lot of help.

We've had some great support from Dr.

Rowhowin and, uh, health departments here in Florida.

We couldn't have done it on her own.

Well, I want to tell one more story that applied to us personally,

because you and Shelly were fantastic with the Grief Share course where we went

through it literally was learning about grief, but it was also very comforting

that we all spoke the same language when you're out in the real world.

You know, people saying, how about them, Yankees?

Okay.

I'm a Yankee fan, but I look at the Yankees differently

than I did when Matt was alive.

It's just, it's a baseball game.

It's different.

So when you're out, dealing in the real world is just a different

set of circumstances and people and language you're dealing with.

So being among people who spoke the same language, it just made it easier.

You didn't have to explain anything, tell the story for the umpteenth time and

try to put a square peg in a round hole.

But when it ended, it really affected us because you had

this wonderful, um, ceremony.

And I'll just digress for a second, which is interesting because what the

ceremony was, was having everybody in the Grief Share program, write

a note to your lost, loved ones.

So Debbie and I wrote notes to Matt and we all went out and threw it

in the bonfire and saw the smoke go up, hoping against hope that

your lost loved one would get it.

And Debbie's message to Matt was we'd not heard from him.

Like we absolutely believe that we had been contacted by Matt in afterlife.

And after we threw his note into the bonfire, we went into our car to go

home and it was bittersweet because we loved going through the Grief Share

program, but it was over, it was sorta, like you said, with the grief process,

everybody's, they're helpful, but then people leave and you're on your own.

In the same thing with grief shared, it goes on Monday nights, but then you got to

go back to the, to your house and reality.

And we went into the car and we know for an absolute guaranteed.

No doubt what the last song that Matt listened to on this planet, it was a

1967 song by The Association called Never My Love and of all the songs

they could have played on the radio.

We have satellite radio with a million different stations,

really different songs.

I started at car up right after we left.

And Debbie threw that note into the bonfire, asking

for Matt to give us a sign.

We turned the car on and that this Jackie says, and here is 1967, The

Association Never My Love and Debbie and I looked at each other and go, what

are the odds of that ever happening?

And.

It just meant so much to us that I think Matt really knew

we needed to hear from him.

And we did.

I really believe that.

And it's, I don't want him to say the same thing, but it just interesting

because we were, again, I'm, I'm a sports fan and they had this

documentary recently about Michael Jordan and the coach was Phil Jackson.

Who's a very metaphysical, very, very inteligient very intellectual type of guy.

And they all knew that this team was going to go the seperate ways.

And at the end of all, that the, the way they documented

ended, they did the same thing.

They took notes through it in a bonfire.

And Phil Jackson had grown up, I think, in.

Montana with very close contact with the American Indian population.

And ironically, my mother, who was this Jewish woman from New York City

was a public health nurse who spent six months on a Blackfeet Indian

reservation in broadening Montana.

And she fell in love with the American Indians.

Till the day she died she was in contact with the Blackfoot

Indian reservation in Montana.

She went out there in 1990 with my father, some 43 years after she was there.

And she saw middle-aged people that she helped bring into the world

because she was the only nurse.

If you were born 1947, she was there bringing you into the the world.

And so my mother always had a soft part of her heart with the Indian

philosophy of living and dying.

And I think Phil Jackson had that.

And I think I sort of have it now from the bonfire because

it just, I just was different.

And so it's amazing how you can take grief and say, we're going to do something

positive out of the ultimate negative that can happen to anybody because we

want our loved ones to make a difference.

And I think that, especially when you lose a child, you want to make

sure nobody's ever going to forget the effect that your son had on the

earth and the fact that they're not here now, it's our goal to do it.

So I cannot thank you enough for the effect you've had in our lives.

And for the other hundreds of people that you've affected that haven't told

you that I'm speaking on their behalf, because you've had a wonderful effect,

not just medically with the foundation, but also what you do with Grief Share.

And hopefully what we do with this show, because through technology, we

obviously are going to have a much easier time reaching many, many,

many people that will be grieving.

Again, this show will hopefully be out there.

A thousand years from now.

So I'll just tell you that we're recording this in the year 2020, when

there's a worldwide pandemic and somebody thousand years now, listening to this

might have to go through a history book or a Google, or who knows what

the be then to read about the 2020 pandemic, but we're in the middle of it.

Right

And I think because of that, it's just the unfortunate

reality that people that don't even know it yet will be in our shoes,

experiencing grief like we have.

So I know when you and I talked about how to help others, a show like this

with technology that now exists is the way to help as many people as possible.

And I know Matt would want me to do that.

And it sure the heck sounds like Jordan would want the same.

Am I correct?

Yes.

And Shelly and I are just like any other couple that loses somebody really close.

You don't want people to forget who they ever were and, um, that keeps us going.

Yeah, I forgot which civilization it was and I should

Google this, but it just came into my head that there's a civilization

that believes you actually die twice.

You die physically obviously when you're physically no

longer here and you pass away.

But you also die a second time when the last time somebody on

his planet mentioned your name.

And I heard that many times before and again, I don't know what civilization

it's attributed to, but I never really understood it until Matt passed away.

And I totally understand it now.

I want people to understand how lucky I was as a father and our family was

as a unit to have Matt in our lives.

He just was a gift from God.

And the fact that he's not here physically doesn't stop our love and it

doesn't stop the good work that he did.

And I'll, I'll just try to close with this, you know, at the Eulogy

I gave, I had to tell about Matt's life to many people didn't know him.

A lot of his friends were there, but a lot of our friends were there.

They never met Matt.

So I had to use a lot of quotations from movies and I use the line last

line that Patrick Swayze Mays, in the movie Ghost with Demi Moore.

If you remember the movie he was, he passed on and he was a ghost and

she didn't see him till the end.

And when he was going to the other side, he just told her that he said, I love you.

I've always loved you.

And it's amazing.

The love inside you take it with you.

I remember that line.

Yeah.

And I believe that,

and that is absolutely true because he's been

gone and the love doesn't go.

The love doesn't go.

So.

I think we both have a connection with our children that is different

than other people's because our sons are no longer physically here,

but it doesn't make it less real.

Doesn't make it less significant and doesn't make it less important

to the betterment of mankind.

And I believe that.

So I can't thank you enough for telling your story and you've

been such a good friend and such a help through our journey.

And what I hope from this show that both of us will be able to

help as many people as possible.

They will be on the same journey that we have been on since we lost our sons.

So, thank you so much for telling your story, Steve, and

Oh thanks Marshall.

You've been a very good friend.Thank You so much.

All right.

Thank you.

Thank you for joining us on Hope Thru Grief with your cohost

Marshall Adler and Steve Smelski.

I hope our episode today was helpful and informative.

Since we are not medical or mental health professionals, we cannot.

And will not provide any medical, psychological, or mental health advice.

Therefore, if you or anyone, you know, requires medical or mental health

treatment, please contact a medical or mental health professional immediately.