April 7, 2024 • 15 mins
Original Air Date: April 7, 2024
Ellen and Jonathan Young tragically lost their toddler daughter, Casey, to SUDC, Sudden Unexplained Death In Children. Their May Run For Casey event will raise money and awareness.
Ellen and Jonathan Young tragically lost their toddler daughter, Casey, to SUDC, Sudden Unexplained Death In Children. Their May Run For Casey event will raise money and awareness.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome to Sunstein Sessions on iHeartRadio,conversations about issues that matter. Here's your
host, three time Grasie Award winner, Shelley Sunstein. I want to introduce
you to Ellen Young. She ismarried to Jonathan Young, who has become
a friend of mine. He isthe general manager of the Grand Central Oyster
(00:21):
Bar, the greatest oyster bar onEarth in my humble opinion. But also
I'm honored that Jonathan has joined meon World Trade Center Climes and on the
Tunnel to Towers five K run.So, like I said, we have
(00:41):
become friends. And unfortunately, yearsago, soon after I first met Jonathan,
I believe Ellen and Jonathan lost theirtoddler daughter. It was not sudden
infant deaths, but it was somethingelse, Casey and Casey's spirit lives on
(01:07):
every year with the Run for Casey. It's a five K and it is
coming up, and it is comingup May fourth, and so I wanted
Ellen to tell the story because Ithink this is something that people are not
aware of. I mean, there'sactually a condition that caused the tragic death
(01:33):
of Casey. So I know it'svery difficult talking about this. I appreciate
you going there no, and Iappreciate you having me on because I think
spreading awareness is one of the mostimportant things, because people don't know that
said an unexplained death in childhood exists. They think only about skids, which
is age one and below. Soin twenty eleven, just before her second
(02:00):
birthday, Casey passed away suddenly andunexpectedly. That morning, she had a
slight fever, you know, sortof fine. We were going to my
oldest daughter, Jordan's classroom, andyou know, slight cold, nothing,
(02:20):
nothing out of the ordinary for afor a toddler. And that day she
went down for her afternoon nap.She had been playing right before that.
I checked on her during the nap, and when I went to get her,
I found her and had to callnine one one, and you know,
some of those details of finding hersort of the trauma that I lived
(02:44):
with all the time. So shepassed away on June third, and twenty
eleven. Her death was categorized assudden unexplained death in childhood. And what
that means is that her death,we don't know how or why she died
to this day, even after aninvestigation, even after an autopsy, there
(03:08):
is no there is no answer,and most often this occurs with seemingly healthy
children who go to sleep and reallyjust never wake up. And that's what
happened with Casey. You know,obviously losing her was was unimaginable and then
(03:29):
not knowing how or why, uh, you know, that fear is sort
of paralyzing. And soon after herdeath that we found the s u d
C Foundation, the Sudden Unexplained Deathin Childhood Foundation, and they were a
lifeline for for our family in termsof supporting us in our grief and supporting
(03:49):
us through you know, navigating deathinvestigations and DNA banking and genetic research for
our existing children. And they reallythey do so much good work and to
know that we weren't alone, andunfortunately, you know, to find this
community that you know, no onewants to be a part of. But
(04:14):
it's about four hundred children every yearat least are lost to sudden and explain
death in childhood and it's actually thefifth leading cause of death in children age
one to four. And there's stillno public funding for SUDC. So they
really are all about spreading awareness becauseit's important. We don't know why or
(04:34):
how these children are dying but wealso don't know how to predict it or
prevent it, so research is reallyimportant. And so I just knew after
her death that one way to makesome sense and to find meaning is to
is to support the SUDC Foundation sothat no other family has to go through
this and so that we can reallyenvision a world where this is not the
(04:58):
case. So that's sort of ourstory, in Casey story, and how
you know, ever since her death, we we've really been connected to the
SUDC Foundation. And I sort offeel, you know, not just to
only celebrate Casey and remember Casey andher life in importance, but you know
all the children who who are gonetoo soon. So I did start fundraising
(05:20):
for them. And then that's sortof how I came recently to the idea
of race directing this five K runfor Casey which is on Saturday, May
fourth, and where it is inCranford, New Jersey. So we are
a Brooklyn to Maplewood transplant family.And when I came to New Jersey,
(05:44):
uh, that's when I started running. I actually was not necessarily a runner
before then, and I actually thisis also not a plug, but I
found orange theory fitness and I becamepart of that community in Garwood, New
Jersey, and I started running.I started did my first five k,
and I sort of got hooked andI just sort of thought to myself,
well, what if what if Icombined this passion for running, which actually
(06:09):
helped me with my own mental healthas of you know, as well as
my physical health, with you know, raising donation dollars for SUDC. And
I'm like, could I host afive k? So we did it last
year for the first time. Itwas an amazing success. It's in No
Mahegan Park, which is a beautifulpark in Cranford, New Jersey. It's
(06:29):
a scenic and flat course. Ihad run many races there myself, so
I just sort of like started figuringit out. Could I actually do this?
And with the SUDC Foundation, they'vebeen a wonderful partner in helping me
set this up. Run for Caseycame to be and it was a really
beautiful way to remember Casey, tocome together with friends and family and strangers
(06:53):
and promote awareness and runners and andwe're doing it again this year. We
have a new and improved five kroute this year. It's going to be
chip timed for runners as opposed togun times, which makes a difference for
your time. We have a kid'sone mile fun run and craft center and
(07:14):
face paint, so it's a reallyfamily friendly event and an amazing raffle table.
We've had raffles from Grand Central OysterBar it was always very generous and
donated a raffle Hilltop Bicycles donating specializedbikes. So a huge place where you
can get raffles of lots of localrestaurants and vendors and things like that.
(07:35):
And this year just the aim isto grow our runnership, to grow our
sponsorship and raises much money for SUDCthat we can so that they can continue
on with the research and advocacy workthat they do. I'm speaking with Ellen
Young g and her husband Jonathan Youngthe general manager of the Grand Central Oyster
(07:59):
Bar Tratch lost their daughter to sudden, unexplained death in child to something that
most people are not even aware of. And you're having the Run for Casey
coming up on May fourth in Cranford. I know you're looking for sponsors.
(08:20):
So if someone wants to sponsor theevent, how would they reach you,
and also how would they reach youto sign up for the run. So
if you we're on run sign up, which is you can go right to
run for Casey. If you evenjust Google run for Casey twenty twenty four,
we should pop up right there.I will also I have the link
(08:41):
that we can we can post.But run for Casey twenty twenty four,
you go write to our race website. On our race website, you can
contact us for sponsorship, you cansign up to run the race. You
can send an email directly to me. Right from there. You can also
donate if you're not able to joinus and run in New Jersey. So
(09:07):
that's just run for Casey twenty twentyfour and you should be able to get
right to the link for it.We're definitely in need of some sponsors and
runners. We also have a lotof walkers, so if you feel like
coming out and walking, this ismy daughter Sydney and she and her friends
are all coming together to walk thefive k. We had a lot of
walkers as well, and to bringyour family and to have a beautiful day
(09:31):
in Nomehgen Park. So Sydney issitting next to mom Ellen Young and all
I'm thinking a beautiful eleven year oldgirl but all I'm thinking of is how,
oh my god, I mean,you must have been terrified during your
(09:52):
pregnancy and even after Sydney's birth.I just don't even understand. I can't
wrap my head around how you hadthe courage Ellen to do this that.
Thank god you did. I appreciatethat. Yeah. Yeah, So Sydney
is our our rainbow baby after Casey, and we have Jordan who is about
(10:13):
to graduate college in a couple ofmonths, and congratulations, thank you.
It is it is. It's terrifying. And you put one foot in front
of the other for the kids andand for that purpose, and I have
to say, you know, notknowing how or why is still something that
(10:35):
we live with all the time.And obviously the kids know what happened to
their sister and are always involved withwith any event for Casey and Jordan really
passionate about that as well. Youknow, the SUDC Foundation did help us
with genetic testing, they did helpus with DNA banking. They do have
(10:56):
services for siblings. They provide youknow, support systems for siblings and parents,
and I think all of that havereally helped us and helped us to
find some purpose with this as well. But I can't. I can't say
that it's still not terrifying. Youknow, you you check on every child,
(11:16):
no matter how old they are,you know when they're sleeping now,
and and and and deal with that. But just sort of moving forward.
And I think having these events therun for Casey, that's for me,
a way of doing something for herand still sort of you know, keeping
her memory alive and helping others tounderstand s U d C. So that
(11:39):
no other family has to do whatwe do. But it's hard. I
know, Yes, I know yousay that running has helped your mental health.
I find that exercised us. Isthere anything else that helped calm your
anxiety over time? That's a goodquestion. When after she passed, I
(12:01):
had started my own foundation, andI think that was that's what helped my
anxiety. That I was still sortof doing something, was being really involved
in fundraising and letting people know whoCasey was and what happened to her,
and that actually for me was verytherapeutic. And communicating with the other families
who had gone through the same thingthat I had gone with those sort of
(12:22):
support groups, so that calms mewhen I'm when I'm working to do something
for Casey, and I would sayyeah, and the exercise if it wasn't
running at first, and now itis the running. I'm actually training for
my first half marathon day. Ellena little terrified, but that's in April,
(12:46):
but it really yeah, I meanit's it's That's what's helped me is
is having that time to exercise anddo that has really helped me. But
also connecting with other families who havebeen through the same thing that we have.
It sounds odd, but it's comfortingin some sense. And then putting
(13:09):
on these events where I'm still doingsomething for her. I'm not actively parenting,
but I'm doing something still for myCasey. We only have a couple
of minutes left. Ellen, isthere anything else she'd like the audience to
know. I think Jonathan had mentionedthat there might have been some breakthroughs in
research. The SUDC Foundation they doa lot of research as where a lot
(13:33):
of the donation dollars go, andthey have something called the SUDC Research Collaborative,
and that's home base actually is rightin New York City at NYU Langone
with the Mayo Clinic and Yu Andthere was some recent breakthroughs in research,
which you know, it's not givingus an answer at this moment, but
they have been, you know,making progress in their research dealing with febrile
(13:58):
seizures, which is something that youknow, I don't want to speak too
much about the scientific research. Youknow, they you know, are very
normal in young children and can notnecessarily cause harm, but a good percentages
of children who died of SUDC doexperience fibrile seizures beforehand. And that company
(14:20):
she did when she had a fever, she did a couple of months before
she passed away. She did havea fibrile seizure and they're finding that this
occurrence more often than not. Andthey were able to view now with I
guess technology, some videos from babymonitors sort of in last moments to see
if if children were experiencing seizures.The SUDC Foundation has their own website SUDC
(14:46):
dot org, and if you goon you can get an overview of the
research being done through this collaborative.So it just it fuels it that there
are breakthroughs being made. There isyou know, progress being made, and
we want to get to a placewhere we can find out, you know,
like SIDS, what are some thingsthat we can do to prevent it?
(15:07):
And you know, what are someanswers to why these children are passing
away? Well, thank you,thank you so much. I'm afraid for
all the time, but may forthank Cranford, run for race for Casey.
Get in touch with Ellen Young.You've been listening to Sunsteen sessions on
iHeartRadio, a production of New York'sclassic rock Q one O four point three
Welcome to Sunstein Sessions on iHeartRadio,conversations about issues that matter. Here's your
host, three time Grasie Award winner, Shelley Sunstein. I want to introduce
you to Ellen Young. She ismarried to Jonathan Young, who has become
a friend of mine. He isthe general manager of the Grand Central Oyster
(00:21):
Bar, the greatest oyster bar onEarth in my humble opinion. But also
I'm honored that Jonathan has joined meon World Trade Center Climes and on the
Tunnel to Towers five K run.So, like I said, we have
(00:41):
become friends. And unfortunately, yearsago, soon after I first met Jonathan,
I believe Ellen and Jonathan lost theirtoddler daughter. It was not sudden
infant deaths, but it was somethingelse, Casey and Casey's spirit lives on
(01:07):
every year with the Run for Casey. It's a five K and it is
coming up, and it is comingup May fourth, and so I wanted
Ellen to tell the story because Ithink this is something that people are not
aware of. I mean, there'sactually a condition that caused the tragic death
(01:33):
of Casey. So I know it'svery difficult talking about this. I appreciate
you going there no, and Iappreciate you having me on because I think
spreading awareness is one of the mostimportant things, because people don't know that
said an unexplained death in childhood exists. They think only about skids, which
is age one and below. Soin twenty eleven, just before her second
(02:00):
birthday, Casey passed away suddenly andunexpectedly. That morning, she had a
slight fever, you know, sortof fine. We were going to my
oldest daughter, Jordan's classroom, andyou know, slight cold, nothing,
(02:20):
nothing out of the ordinary for afor a toddler. And that day she
went down for her afternoon nap.She had been playing right before that.
I checked on her during the nap, and when I went to get her,
I found her and had to callnine one one, and you know,
some of those details of finding hersort of the trauma that I lived
(02:44):
with all the time. So shepassed away on June third, and twenty
eleven. Her death was categorized assudden unexplained death in childhood. And what
that means is that her death,we don't know how or why she died
to this day, even after aninvestigation, even after an autopsy, there
(03:08):
is no there is no answer,and most often this occurs with seemingly healthy
children who go to sleep and reallyjust never wake up. And that's what
happened with Casey. You know,obviously losing her was was unimaginable and then
(03:29):
not knowing how or why, uh, you know, that fear is sort
of paralyzing. And soon after herdeath that we found the s u d
C Foundation, the Sudden Unexplained Deathin Childhood Foundation, and they were a
lifeline for for our family in termsof supporting us in our grief and supporting
(03:49):
us through you know, navigating deathinvestigations and DNA banking and genetic research for
our existing children. And they reallythey do so much good work and to
know that we weren't alone, andunfortunately, you know, to find this
community that you know, no onewants to be a part of. But
(04:14):
it's about four hundred children every yearat least are lost to sudden and explain
death in childhood and it's actually thefifth leading cause of death in children age
one to four. And there's stillno public funding for SUDC. So they
really are all about spreading awareness becauseit's important. We don't know why or
(04:34):
how these children are dying but wealso don't know how to predict it or
prevent it, so research is reallyimportant. And so I just knew after
her death that one way to makesome sense and to find meaning is to
is to support the SUDC Foundation sothat no other family has to go through
this and so that we can reallyenvision a world where this is not the
(04:58):
case. So that's sort of ourstory, in Casey story, and how
you know, ever since her death, we we've really been connected to the
SUDC Foundation. And I sort offeel, you know, not just to
only celebrate Casey and remember Casey andher life in importance, but you know
all the children who who are gonetoo soon. So I did start fundraising
(05:20):
for them. And then that's sortof how I came recently to the idea
of race directing this five K runfor Casey which is on Saturday, May
fourth, and where it is inCranford, New Jersey. So we are
a Brooklyn to Maplewood transplant family.And when I came to New Jersey,
(05:44):
uh, that's when I started running. I actually was not necessarily a runner
before then, and I actually thisis also not a plug, but I
found orange theory fitness and I becamepart of that community in Garwood, New
Jersey, and I started running.I started did my first five k,
and I sort of got hooked andI just sort of thought to myself,
well, what if what if Icombined this passion for running, which actually
(06:09):
helped me with my own mental healthas of you know, as well as
my physical health, with you know, raising donation dollars for SUDC. And
I'm like, could I host afive k? So we did it last
year for the first time. Itwas an amazing success. It's in No
Mahegan Park, which is a beautifulpark in Cranford, New Jersey. It's
(06:29):
a scenic and flat course. Ihad run many races there myself, so
I just sort of like started figuringit out. Could I actually do this?
And with the SUDC Foundation, they'vebeen a wonderful partner in helping me
set this up. Run for Caseycame to be and it was a really
beautiful way to remember Casey, tocome together with friends and family and strangers
(06:53):
and promote awareness and runners and andwe're doing it again this year. We
have a new and improved five kroute this year. It's going to be
chip timed for runners as opposed togun times, which makes a difference for
your time. We have a kid'sone mile fun run and craft center and
(07:14):
face paint, so it's a reallyfamily friendly event and an amazing raffle table.
We've had raffles from Grand Central OysterBar it was always very generous and
donated a raffle Hilltop Bicycles donating specializedbikes. So a huge place where you
can get raffles of lots of localrestaurants and vendors and things like that.
(07:35):
And this year just the aim isto grow our runnership, to grow our
sponsorship and raises much money for SUDCthat we can so that they can continue
on with the research and advocacy workthat they do. I'm speaking with Ellen
Young g and her husband Jonathan Youngthe general manager of the Grand Central Oyster
(07:59):
Bar Tratch lost their daughter to sudden, unexplained death in child to something that
most people are not even aware of. And you're having the Run for Casey
coming up on May fourth in Cranford. I know you're looking for sponsors.
(08:20):
So if someone wants to sponsor theevent, how would they reach you,
and also how would they reach youto sign up for the run. So
if you we're on run sign up, which is you can go right to
run for Casey. If you evenjust Google run for Casey twenty twenty four,
we should pop up right there.I will also I have the link
(08:41):
that we can we can post.But run for Casey twenty twenty four,
you go write to our race website. On our race website, you can
contact us for sponsorship, you cansign up to run the race. You
can send an email directly to me. Right from there. You can also
donate if you're not able to joinus and run in New Jersey. So
(09:07):
that's just run for Casey twenty twentyfour and you should be able to get
right to the link for it.We're definitely in need of some sponsors and
runners. We also have a lotof walkers, so if you feel like
coming out and walking, this ismy daughter Sydney and she and her friends
are all coming together to walk thefive k. We had a lot of
walkers as well, and to bringyour family and to have a beautiful day
(09:31):
in Nomehgen Park. So Sydney issitting next to mom Ellen Young and all
I'm thinking a beautiful eleven year oldgirl but all I'm thinking of is how,
oh my god, I mean,you must have been terrified during your
(09:52):
pregnancy and even after Sydney's birth.I just don't even understand. I can't
wrap my head around how you hadthe courage Ellen to do this that.
Thank god you did. I appreciatethat. Yeah. Yeah, So Sydney
is our our rainbow baby after Casey, and we have Jordan who is about
(10:13):
to graduate college in a couple ofmonths, and congratulations, thank you.
It is it is. It's terrifying. And you put one foot in front
of the other for the kids andand for that purpose, and I have
to say, you know, notknowing how or why is still something that
(10:35):
we live with all the time.And obviously the kids know what happened to
their sister and are always involved withwith any event for Casey and Jordan really
passionate about that as well. Youknow, the SUDC Foundation did help us
with genetic testing, they did helpus with DNA banking. They do have
(10:56):
services for siblings. They provide youknow, support systems for siblings and parents,
and I think all of that havereally helped us and helped us to
find some purpose with this as well. But I can't. I can't say
that it's still not terrifying. Youknow, you you check on every child,
(11:16):
no matter how old they are,you know when they're sleeping now,
and and and and deal with that. But just sort of moving forward.
And I think having these events therun for Casey, that's for me,
a way of doing something for herand still sort of you know, keeping
her memory alive and helping others tounderstand s U d C. So that
(11:39):
no other family has to do whatwe do. But it's hard. I
know, Yes, I know yousay that running has helped your mental health.
I find that exercised us. Isthere anything else that helped calm your
anxiety over time? That's a goodquestion. When after she passed, I
(12:01):
had started my own foundation, andI think that was that's what helped my
anxiety. That I was still sortof doing something, was being really involved
in fundraising and letting people know whoCasey was and what happened to her,
and that actually for me was verytherapeutic. And communicating with the other families
who had gone through the same thingthat I had gone with those sort of
(12:22):
support groups, so that calms mewhen I'm when I'm working to do something
for Casey, and I would sayyeah, and the exercise if it wasn't
running at first, and now itis the running. I'm actually training for
my first half marathon day. Ellena little terrified, but that's in April,
(12:46):
but it really yeah, I meanit's it's That's what's helped me is
is having that time to exercise anddo that has really helped me. But
also connecting with other families who havebeen through the same thing that we have.
It sounds odd, but it's comfortingin some sense. And then putting
(13:09):
on these events where I'm still doingsomething for her. I'm not actively parenting,
but I'm doing something still for myCasey. We only have a couple
of minutes left. Ellen, isthere anything else she'd like the audience to
know. I think Jonathan had mentionedthat there might have been some breakthroughs in
research. The SUDC Foundation they doa lot of research as where a lot
(13:33):
of the donation dollars go, andthey have something called the SUDC Research Collaborative,
and that's home base actually is rightin New York City at NYU Langone
with the Mayo Clinic and Yu Andthere was some recent breakthroughs in research,
which you know, it's not givingus an answer at this moment, but
they have been, you know,making progress in their research dealing with febrile
(13:58):
seizures, which is something that youknow, I don't want to speak too
much about the scientific research. Youknow, they you know, are very
normal in young children and can notnecessarily cause harm, but a good percentages
of children who died of SUDC doexperience fibrile seizures beforehand. And that company
(14:20):
she did when she had a fever, she did a couple of months before
she passed away. She did havea fibrile seizure and they're finding that this
occurrence more often than not. Andthey were able to view now with I
guess technology, some videos from babymonitors sort of in last moments to see
if if children were experiencing seizures.The SUDC Foundation has their own website SUDC
(14:46):
dot org, and if you goon you can get an overview of the
research being done through this collaborative.So it just it fuels it that there
are breakthroughs being made. There isyou know, progress being made, and
we want to get to a placewhere we can find out, you know,
like SIDS, what are some thingsthat we can do to prevent it?
(15:07):
And you know, what are someanswers to why these children are passing
away? Well, thank you,thank you so much. I'm afraid for
all the time, but may forthank Cranford, run for race for Casey.
Get in touch with Ellen Young.You've been listening to Sunsteen sessions on
iHeartRadio, a production of New York'sclassic rock Q one O four point three
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