April 11, 2025 • 11 mins
This week, we meet an extraordinary young hero: 6-year-old Nikos Kaymakcian, New Jersey’s 2025 Children’s Miracle Network Champion. Diagnosed with the most serious form of Spina Bifida before birth, Nikos has overcome tremendous challenges with the support of his family and care team at Children’s Specialized Hospital. A wheelchair basketball player, NY Giants superfan, and proud big brother, Nikos brings determination and joy to every part of his life.
We speak with Nikos and his mom, Nicole, about their journey and what hope looks like for families of children with complex medical needs.
💙 Support kids like Nikos: www.give2csh.org/chw
We speak with Nikos and his mom, Nicole, about their journey and what hope looks like for families of children with complex medical needs.
💙 Support kids like Nikos: www.give2csh.org/chw
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Meet six year old Nicos Camachian from New Jersey. He's
New Jersey's twenty twenty five Miracle Network Champion. Diagnosed with
the most serious form of spina bifida before he was
even born, Nicos has defied the odds with the help
of his family and his team at Children's Specialized Hospital.
A wheelchair basketball player, New York Giants super fan, we
(00:22):
forgive him and loving big brother Nicos. He brings joy, determination,
and resilience to everything that he does. So we are
very very pleased to speak to both Nicos and his mom, Nicole.
I'm going to start with Nicole. Can you take us
back to the moment when you found out about Nico's
diagnosis and what would those early days like for your family?
Speaker 2 (00:45):
Hello, thank you for having me. I just, you know,
want to start off saying it was a very traumatic
moment for us. We you know, we're here five months pregnant,
going in for our appointment, thinking that it was going
to be a beautiful day. We were actually planning to
go to the city after our appointment, and during that
appointment being told that our son there was something wrong,
(01:06):
and those minutes when they were looking at the sonogram
just saying, you know, give a few a few minutes,
we'll see what's going on. We'll come back. They kept
leaving their room and then coming back again. So when
this was all going on, my husband and I were
looking at each other thinking, what is happening right now?
Is the baby? Okay? What's what's going on? And finally
they came back and said, you know, we think there's
(01:27):
something wrong. We see maybe a hole in his back.
It could be spina bifida. I'm not sure if you
know what that is. And we had zero clue what
that meant. But you're gonna have to follow up with
Chop in Philadelphia, and you're gonna have to just go
from there. So those early days of getting that first
tragic news of our you know, beautiful baby, we already
had a son who was two at the time, and
(01:49):
we just thought this was like a normal visit. We
had no idea we were going to get this kind
of terrible news. So it was very sad and upsetting,
and you know, we left there crying and just wondering
why and how and you know, what did I do wrong?
Did I do something wrong? And was what was going
to be the outcome? So that was just really upsetting
at that point.
Speaker 1 (02:08):
I think when a situation like this arises, oftentimes parents
will blame themselves, well, think, you know, I should have
done this, I should have done that, when in fact
there was nothing that you could have done. But what
you are doing now is making sure that Nicos has
the best care possible and Negos. We heard that you
love playing basketball and cheering for the Giants. What's your
(02:31):
favorite thing about both?
Speaker 3 (02:32):
Oh? So, I both like football past of all, as
you know, but of course I like shooting. I like throwing,
and in football, I like throwing making touchdowns.
Speaker 1 (02:44):
That is fantastic. How do you feel about being named
the New Jersey twenty twenty five Children's Miracle Network Champion?
Pretty cool?
Speaker 3 (02:53):
Yeah, it is pretty cool.
Speaker 1 (02:54):
Yeah. So when you when you heard you were chosen, like,
tell us how you felt about it and you know
what that it's meant for you.
Speaker 3 (03:01):
I was like, first, I was like what I they
said it? I was like first, I was like, I
was like, yeah, I'm and then it's like it made
me proud.
Speaker 1 (03:14):
Well, we are proud for you as well. I wonder
if you can talk Nicole about children specialized hospitals supporting
Nkos's journey, especially through therapy and his love for the
Spider Cage.
Speaker 2 (03:27):
Yeah, so you know, upon entering Children's Specialized Hospital, they
were just from the very beginning such a help, so
kind and welcoming and loving. They have provided so much
care for Nicos and the spider Cage being such a
big pivotal point for everything because with the weakness in
his legs, he can't you know, he doesn't have a
(03:47):
lot of strength there. So the spider Cage is a
cage with elastic bungies and therasuits that are connected to
Nicos to give him that ability to actually stand up
and take that pressure off of the weight of his
ankles so he can actually stand and jump and stretch
(04:07):
and move and it builds the muscle that are in
his glutes and his muscles and his ankles to make
them stronger. So the spider cage is one of his
favorite things there. He loves it, and we're just so
thankful that we're able to even attend these physical therapy
sessions because without the spider Cage, he wouldn't be where
he is. I mean, Children's has just done so much
(04:30):
with him and worked with him, and the dedication that
these physical therapists put in is just you know, there's
not enough banks that I can give them for what
they do for my son.
Speaker 1 (04:41):
Yeah, and also I just wonder if you could talk
about some of the biggest milestones that Nicos has reached
the doctors didn't expect and how did you all celebrate.
Speaker 2 (04:53):
Yeah, so, oh, there's so many milestones. So, you know,
the doctors originally had told us that he would not
do a lot of things. They told us that he
most likely would not walk, he would be wheelchair bound.
You know, it was devastating. We got the news from
Chop and we actually were hopeful because when we were
getting some of those sonograms, everything looked great. Brain was
(05:14):
looking great, heart, all his you know, body parts were
moving in my womb. So we were thinking, you know,
this is he looks fine to us. But when we
got in that final meeting, they said, this is not
something to take lightly. This is going to be a
huge challenge and maybe this is something that you don't
want to go through with, you know, you have another child,
could be a burden. So there was just a lot
(05:35):
to you know, think about in those beginning stages. But
then after we sort of going to Children's and they
were working with him. Every single milestone that he met
was a huge victory. And you know it's funny because
his name Nicos, the Greek root means victory. So every
time we feel that he meets a milestone, we just
(05:56):
feel like, here we go again, He's meets this milestone
and he not have done that without Children's working with him. So,
you know, so much in the time that they put
in with him, and what would we.
Speaker 1 (06:07):
Do, Nicos.
Speaker 2 (06:07):
We would buy him certain things that made him excited.
You know, there was a time he was into little
action figures and we would either buy him the latest one,
the Captain America or the Spider Man or the Superman.
Then his love for sports came, so you know each
time he took a step and we would say, Nicos,
you know if you first he started off with the
army crawl and then after that, you know, they would
(06:29):
have him walking on the treadmill, and even that was
a big deal because things for us come a lot
easier when you have somebody like Nico's for him to
just stand up, or for him to get out of
a chair, for him to lift down and pick up
a piece of paper, it's one hundred times harder for
him than it is for us. So every time he
came back from physical therapy and they reached a new milestone,
(06:49):
it was like we hit the lottery. It was just
just made us so proud and happy and thankful that
they are able to get them to these places.
Speaker 1 (06:58):
Yeah, so, Nico, what was what was the best thing
your favorite thing when you were going to children's specialized hospital?
What do you think about the hospital and the people
that you work with?
Speaker 3 (07:10):
So, so, my father thing is to do there is
on the spider cage as well and call on chadwill
and splay around, laugh on and let's it.
Speaker 1 (07:23):
Okay, those are all good things, Nicole. I wonder what
you would want other families facing a spina bifida diagnosis
to know and how can people support kids like Nico's.
Speaker 2 (07:33):
Yeah, so, I My biggest thing that I would say
to these families is that when you get news like
spina bifida or you know, any of these other diagnosis
that families get, is don't be afraid. Don't be afraid
because a lot of these things that you're told they can't,
they won't. This is going to be you know, tragic,
(07:53):
just know there is hope on the other side. We
are Christians, so we're being in our faith and you
know we put our trust in faith in Jesus, right, Nicos, Yeah,
and we you know, we always say with God, all
things are possible, and we know that when you have
a place like Children Specialized Hospital that's able to come
alongside of you, stand with you. I mean, they're like
(08:13):
family to us. So you know, they have taken these
moments and Transformnicos into you know, this this strong boy
that he didn't know that he had this strength that
he has inside and with their care, with their love,
they they've gotten him to such a place where he's
built confidence that he didn't know he had. So just
(08:34):
know that there is support out there. Know that there
is a Children Specialized Hospital that is able to work
with you and walk you through these steps and get
you through moments that just seem like there's just no
hope for my son, because that's what we thought in
the beginning. We just thought, how are we going to
navigate this. I don't have the patience for this. I
don't know if I can endure this, this hardship, but
(08:55):
you do. You just this is your son, This is
your daughter. This is you know, you could get through
these moments with people by your side and the support
and the love, and just know that there's others out
there like you going through the same thing, and there's
support and hospitals like children that can you know, you
meet certain connections and maybe you don't know any other
(09:16):
families with spina bifida, which we didn't when we were
starting to go there, and through some of our sessions,
we would come across the parent and we would start
talking and sure enough, their child had spina bifida. So
you start to build these connections that you wouldn't think
that you would normally have. But because of these things
and these meetings and these sessions, you just build this
relationship and it's a great support. So I would just say,
(09:39):
don't be afraid. You could get through this and you're strong,
just like Nicos. Nicos didn't think he'd be able to
do a lot of things, and here he is with children,
specialized help. He's walking, he has braces, he has a walker.
I mean he does have his wheelchair for long distances.
But with the help and the support, you could you
can get through this. You can do anything, for sure.
Speaker 1 (09:57):
That's great. And Nikos, any shout us? So do you
want to give anyone you want to shout out on
the radio? Anyone you want to say hello to whatever?
Speaker 3 (10:06):
Hi, whoever. People are listening to this, and thank you
all for listening to this, and I hope you have
fun hearing us and it could be fun for you
guys to listen to And that's it. That's all I
wanted to say.
Speaker 1 (10:22):
Well, that was beautiful and it's a lot of fun
listening to you and your mom. Six year old Nicos Camachian,
who is New Jersey's twenty twenty five Children's Miracle Network Champion,
diagnosed with the most serious form of spina bifida before
he was even born, but he is doing amazing things
a wheelchair basketball player, New York Giants super fan. Again,
(10:44):
we forgive you and loving big brother Nico sprigs joy,
determination and resilience to everything that he does. Thanks to
his mom Nicole for also sharing this special journey that
was supported by Children's Specialized Hospital, which does amazing work
with kids who have special needs in so many different areas.
(11:05):
If you want to help, you can also give. You
can go to give the number two c sh dot
org slash c HW and we'll also have that on
our podcast version. Thank you both for joining us today.
Speaker 2 (11:19):
Thank you so much for having us. I really hope
you guys enjoy this.
Speaker 3 (11:22):
Thank you for all you do or help see I
really like this. I really like that therapy, And thanks
to all
Speaker 1 (11:31):
And buy Okay, that's awesome, great, Thank you,
Meet six year old Nicos Camachian from New Jersey. He's
New Jersey's twenty twenty five Miracle Network Champion. Diagnosed with
the most serious form of spina bifida before he was
even born, Nicos has defied the odds with the help
of his family and his team at Children's Specialized Hospital.
A wheelchair basketball player, New York Giants super fan, we
(00:22):
forgive him and loving big brother Nicos. He brings joy, determination,
and resilience to everything that he does. So we are
very very pleased to speak to both Nicos and his mom, Nicole.
I'm going to start with Nicole. Can you take us
back to the moment when you found out about Nico's
diagnosis and what would those early days like for your family?
Speaker 2 (00:45):
Hello, thank you for having me. I just, you know,
want to start off saying it was a very traumatic
moment for us. We you know, we're here five months pregnant,
going in for our appointment, thinking that it was going
to be a beautiful day. We were actually planning to
go to the city after our appointment, and during that
appointment being told that our son there was something wrong,
(01:06):
and those minutes when they were looking at the sonogram
just saying, you know, give a few a few minutes,
we'll see what's going on. We'll come back. They kept
leaving their room and then coming back again. So when
this was all going on, my husband and I were
looking at each other thinking, what is happening right now?
Is the baby? Okay? What's what's going on? And finally
they came back and said, you know, we think there's
(01:27):
something wrong. We see maybe a hole in his back.
It could be spina bifida. I'm not sure if you
know what that is. And we had zero clue what
that meant. But you're gonna have to follow up with
Chop in Philadelphia, and you're gonna have to just go
from there. So those early days of getting that first
tragic news of our you know, beautiful baby, we already
had a son who was two at the time, and
(01:49):
we just thought this was like a normal visit. We
had no idea we were going to get this kind
of terrible news. So it was very sad and upsetting,
and you know, we left there crying and just wondering
why and how and you know, what did I do wrong?
Did I do something wrong? And was what was going
to be the outcome? So that was just really upsetting
at that point.
Speaker 1 (02:08):
I think when a situation like this arises, oftentimes parents
will blame themselves, well, think, you know, I should have
done this, I should have done that, when in fact
there was nothing that you could have done. But what
you are doing now is making sure that Nicos has
the best care possible and Negos. We heard that you
love playing basketball and cheering for the Giants. What's your
(02:31):
favorite thing about both?
Speaker 3 (02:32):
Oh? So, I both like football past of all, as
you know, but of course I like shooting. I like throwing,
and in football, I like throwing making touchdowns.
Speaker 1 (02:44):
That is fantastic. How do you feel about being named
the New Jersey twenty twenty five Children's Miracle Network Champion?
Pretty cool?
Speaker 3 (02:53):
Yeah, it is pretty cool.
Speaker 1 (02:54):
Yeah. So when you when you heard you were chosen, like,
tell us how you felt about it and you know
what that it's meant for you.
Speaker 3 (03:01):
I was like, first, I was like what I they
said it? I was like first, I was like, I
was like, yeah, I'm and then it's like it made
me proud.
Speaker 1 (03:14):
Well, we are proud for you as well. I wonder
if you can talk Nicole about children specialized hospitals supporting
Nkos's journey, especially through therapy and his love for the
Spider Cage.
Speaker 2 (03:27):
Yeah, so you know, upon entering Children's Specialized Hospital, they
were just from the very beginning such a help, so
kind and welcoming and loving. They have provided so much
care for Nicos and the spider Cage being such a
big pivotal point for everything because with the weakness in
his legs, he can't you know, he doesn't have a
(03:47):
lot of strength there. So the spider Cage is a
cage with elastic bungies and therasuits that are connected to
Nicos to give him that ability to actually stand up
and take that pressure off of the weight of his
ankles so he can actually stand and jump and stretch
(04:07):
and move and it builds the muscle that are in
his glutes and his muscles and his ankles to make
them stronger. So the spider cage is one of his
favorite things there. He loves it, and we're just so
thankful that we're able to even attend these physical therapy
sessions because without the spider Cage, he wouldn't be where
he is. I mean, Children's has just done so much
(04:30):
with him and worked with him, and the dedication that
these physical therapists put in is just you know, there's
not enough banks that I can give them for what
they do for my son.
Speaker 1 (04:41):
Yeah, and also I just wonder if you could talk
about some of the biggest milestones that Nicos has reached
the doctors didn't expect and how did you all celebrate.
Speaker 2 (04:53):
Yeah, so, oh, there's so many milestones. So, you know,
the doctors originally had told us that he would not
do a lot of things. They told us that he
most likely would not walk, he would be wheelchair bound.
You know, it was devastating. We got the news from
Chop and we actually were hopeful because when we were
getting some of those sonograms, everything looked great. Brain was
(05:14):
looking great, heart, all his you know, body parts were
moving in my womb. So we were thinking, you know,
this is he looks fine to us. But when we
got in that final meeting, they said, this is not
something to take lightly. This is going to be a
huge challenge and maybe this is something that you don't
want to go through with, you know, you have another child,
could be a burden. So there was just a lot
(05:35):
to you know, think about in those beginning stages. But
then after we sort of going to Children's and they
were working with him. Every single milestone that he met
was a huge victory. And you know it's funny because
his name Nicos, the Greek root means victory. So every
time we feel that he meets a milestone, we just
(05:56):
feel like, here we go again, He's meets this milestone
and he not have done that without Children's working with him. So,
you know, so much in the time that they put
in with him, and what would we.
Speaker 1 (06:07):
Do, Nicos.
Speaker 2 (06:07):
We would buy him certain things that made him excited.
You know, there was a time he was into little
action figures and we would either buy him the latest one,
the Captain America or the Spider Man or the Superman.
Then his love for sports came, so you know each
time he took a step and we would say, Nicos,
you know if you first he started off with the
army crawl and then after that, you know, they would
(06:29):
have him walking on the treadmill, and even that was
a big deal because things for us come a lot
easier when you have somebody like Nico's for him to
just stand up, or for him to get out of
a chair, for him to lift down and pick up
a piece of paper, it's one hundred times harder for
him than it is for us. So every time he
came back from physical therapy and they reached a new milestone,
(06:49):
it was like we hit the lottery. It was just
just made us so proud and happy and thankful that
they are able to get them to these places.
Speaker 1 (06:58):
Yeah, so, Nico, what was what was the best thing
your favorite thing when you were going to children's specialized hospital?
What do you think about the hospital and the people
that you work with?
Speaker 3 (07:10):
So, so, my father thing is to do there is
on the spider cage as well and call on chadwill
and splay around, laugh on and let's it.
Speaker 1 (07:23):
Okay, those are all good things, Nicole. I wonder what
you would want other families facing a spina bifida diagnosis
to know and how can people support kids like Nico's.
Speaker 2 (07:33):
Yeah, so, I My biggest thing that I would say
to these families is that when you get news like
spina bifida or you know, any of these other diagnosis
that families get, is don't be afraid. Don't be afraid
because a lot of these things that you're told they can't,
they won't. This is going to be you know, tragic,
(07:53):
just know there is hope on the other side. We
are Christians, so we're being in our faith and you
know we put our trust in faith in Jesus, right, Nicos, Yeah,
and we you know, we always say with God, all
things are possible, and we know that when you have
a place like Children Specialized Hospital that's able to come
alongside of you, stand with you. I mean, they're like
(08:13):
family to us. So you know, they have taken these
moments and Transformnicos into you know, this this strong boy
that he didn't know that he had this strength that
he has inside and with their care, with their love,
they they've gotten him to such a place where he's
built confidence that he didn't know he had. So just
(08:34):
know that there is support out there. Know that there
is a Children Specialized Hospital that is able to work
with you and walk you through these steps and get
you through moments that just seem like there's just no
hope for my son, because that's what we thought in
the beginning. We just thought, how are we going to
navigate this. I don't have the patience for this. I
don't know if I can endure this, this hardship, but
(08:55):
you do. You just this is your son, This is
your daughter. This is you know, you could get through
these moments with people by your side and the support
and the love, and just know that there's others out
there like you going through the same thing, and there's
support and hospitals like children that can you know, you
meet certain connections and maybe you don't know any other
(09:16):
families with spina bifida, which we didn't when we were
starting to go there, and through some of our sessions,
we would come across the parent and we would start
talking and sure enough, their child had spina bifida. So
you start to build these connections that you wouldn't think
that you would normally have. But because of these things
and these meetings and these sessions, you just build this
relationship and it's a great support. So I would just say,
(09:39):
don't be afraid. You could get through this and you're strong,
just like Nicos. Nicos didn't think he'd be able to
do a lot of things, and here he is with children,
specialized help. He's walking, he has braces, he has a walker.
I mean he does have his wheelchair for long distances.
But with the help and the support, you could you
can get through this. You can do anything, for sure.
Speaker 1 (09:57):
That's great. And Nikos, any shout us? So do you
want to give anyone you want to shout out on
the radio? Anyone you want to say hello to whatever?
Speaker 3 (10:06):
Hi, whoever. People are listening to this, and thank you
all for listening to this, and I hope you have
fun hearing us and it could be fun for you
guys to listen to And that's it. That's all I
wanted to say.
Speaker 1 (10:22):
Well, that was beautiful and it's a lot of fun
listening to you and your mom. Six year old Nicos Camachian,
who is New Jersey's twenty twenty five Children's Miracle Network Champion,
diagnosed with the most serious form of spina bifida before
he was even born, but he is doing amazing things
a wheelchair basketball player, New York Giants super fan. Again,
(10:44):
we forgive you and loving big brother Nico sprigs joy,
determination and resilience to everything that he does. Thanks to
his mom Nicole for also sharing this special journey that
was supported by Children's Specialized Hospital, which does amazing work
with kids who have special needs in so many different areas.
(11:05):
If you want to help, you can also give. You
can go to give the number two c sh dot
org slash c HW and we'll also have that on
our podcast version. Thank you both for joining us today.
Speaker 2 (11:19):
Thank you so much for having us. I really hope
you guys enjoy this.
Speaker 3 (11:22):
Thank you for all you do or help see I
really like this. I really like that therapy, And thanks
to all
Speaker 1 (11:31):
And buy Okay, that's awesome, great, Thank you,
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