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I am joined by a very special guest today, the
co -founder of Live Like Liam. They're having
a very special run walk fundraiser at Jamesville
DeWitt High School on November 29th at 9 a .m.
I am honored to be joined by the co -founder,
Jalal Zaghby. Jalal, how are you? I'm excellent.
Thank you for having me. I'm really happy you're
here. You guys reached out asking if we could
help promote this and it was a no brainer. And
it's a no brainer for the obvious reasons, which
is it's an amazing cause, an amazing story. But
one thing I found when I was kind of researching
beforehand was that your son Liam, one of his
phrases was find the good. And this show is literally
that's what we that's what this show is about.
Good News York is you turn on the news and it's
bad. And we were like, we need to showcase things
in New York that are good. That's awesome. So
I feel like this is a match made in heaven. So.
Jalal, tell us a little bit about yourself and
why you're here today. My name is Jalal Zaghby.
My wife and I, we have four kids. We still say
four kids. Of course. But unfortunately, we lost
Liam January 12th of 2024, so it's coming up
on two years. Liam was born with medical issues.
He was born with a defective heart. He had chromosome
22 deficiency, which can give you like almost
180 things that can go wrong. And one of the
things for him was, you know, his heart was almost
like reversed. So he had to go through like three
heart surgeries. And there was other medical
stuff that he went through altogether, probably
about 16 to 17 procedures. But he always had
that positivity in him. He always, you know,
bounced back and as if like nothing was wrong.
He always tried to find the good in everything
that he did. you know, or any medical struggles
he went through, he found the good and just like,
yeah, I'm gonna be okay, you know, and he was
like, I always say that he was a manager on the
Circus basketball team. Yes. And he loved Circus
Orange basketball, loved them. On top of, you
know, the Celtics, the Vikings, New York Yankees,
and every time a team would lose, I'm like, oh,
Leon, what's going on? He's like, it's gonna
be okay. It's like, he always like, next game
they're gonna win. So he always found the good.
And the way we came with that slogan, a friend
of ours, who was because our organization is
all based on volunteers you know nobody we just
bunch of people who just when we lost liam just
kind of took us over under their wing and they
helped us establish this foundation and a friend
of ours said give me three i asked all of us
to give three words that describe liam so we
all put our two cents in and all of a sudden
he's like he just found the good and everything
and that's why we're kind of going live like
liam find the good That's absolutely beautiful.
And I mean, especially in these crazy times the
last 10 years, it's been harder to find the good.
So people like that are inspiring and what keep
us going. And the other thing I realized is just
how important the number 22 is. Can you tell
us about the significance of the number 22? Yeah.
So number 22 was just... It's like everywhere
we go, it's with us. Liam was born with the chromosome
22 deficiency. Liam passed at age 22. We have,
you know, my kids, you know, Liam, 22, Miriam
is 21, Sophia is 19, Nolan, who is 12 years old,
actually, he was 12 yesterday. He was born on
the 22nd of November. So it's kind of like...
22 is just wherever we go. And lately, like,
it just seems that you look on your phone, it's
22. You go, you know, our friends who are part
of our foundation, they keep saying, like, oh,
my God, look, number 22 is here. Like, every
time something important is happening, that number
just pops up. And I'm not into this, you know,
like, but it's just, it's a comforting, maybe
I'm seeking it, I don't know. You know, I know
exactly what you mean. I struggle with faith
and... you know, is there religion? Is it the
universe? But these coincidences happen sometimes
and it makes you start to think maybe there is
something because it's just it's amazing. So
on November 29th at Jamesville DeWitt High School
9 a .m. it is the Live Like Liam Run and Walk.
Now what's great about this organization is not
only are you raising money for families in need,
but you're creating endowments for the Upstate
Foundation for Chromosome Research, the Ronald
McDonald House. Talk about some of the things
that you guys do with the organization. So when
we first decided to get this organization going,
our goal was to have every place that had an
effect on Liam, who made him who he was. And
Liam was, you know, he had special needs. So
JD High School, JD is from kindergarten all the
way to senior. The support that they gave him
was amazing. So what we do is we do a scholarship
there to go to any kid who showed perseverance
or kindness to others. So that's one. The other
one would be the Ronald McDonald House. Obviously
when we are at Strong Memorial with Liam's third
heart surgery, my wife was pregnant at the time.
And if it wasn't for Ronald McDonald House, I
think it would have been really hard for us.
You know what I mean? The floor above where Liam
had his surgery, and it made our lives very easy.
So we knew the value of that. Upstate Foundation,
now we're blessed that financially we can continue
with our life no matter how many, you know, all
these obstacles that, you know, we faced. But
when we were in the hospital, we saw so many
times where one of them was at the emergency
room and mother came in. She's like, I don't
have money to park, but her kid is. So, you know,
people couldn't afford food for lunch or for
guests. So we decided to establish this endowment.
So that way, people can go to families of kids
who are sick in the hospital, also some of that
to go towards research, you know, chromosome
research, especially chromosome 22. And lastly,
actually, then we have the Inclusive You program
at Syracuse University, which is a program for
kids with special needs, but they'll have the
opportunity to attend college, to have the experience
of being a student and be able to, you know,
give them options to go into the world after
they graduate. Now the state covers two years
but the second two years they don't and it's
not you know it's pricey and not everybody could
afford having their kids go for the next two
years so we were blessed to be able to establish
this hundred thousand dollar scholarship that
we're covering over five year period like twenty
thousand dollars every year for that purpose
only and we've done forty thousand so far in
just five months. That's amazing. So and then
out of nowhere, which was amazing too, Krauss
reached out to us, the NICU unit. We're going
to collaborate with them on something to do with,
you know, Liam was at the NICU there. So every
place that affected us helped us. We're trying
to help people back. It's such a beautiful thing
you're doing. And it really touches me. You know,
I'm not making this about me. It's just so you
want so, you know, I understand. We talked a
little bit about before when I was six years
old, I lost my three year old brother to leukemia
and. we went out to Minnesota where I was giving
him a bone marrow transplant. And I don't have
many memories because I was so young, but I do
remember, just not too many details, but we stayed
at a Ronald McDonald House. And I just remember
how sad and scared and worried my parents were
financially and emotionally. And I remember when
we got to the Ronald McDonald House, obviously
it didn't fix things, but I remember it allowed
them to take a breath. And so what you're doing
for them, it really hits home. Me and I thank
you. You guys stayed at a Ronald McDonald House?
We stayed at Ronald. Yeah, I mean, everything
was at, you know, upstate, but the last surgery
was as strong. So we ended up going up there.
And I'm telling you, it's as a parent of a kid
who's sick, every little bit helps to ease some
of the burdens and some of the worries. So that's
if we can change 0 .01 percent. and make things
better, we're happy that we can do that. That
means, that hits me right here, man. You know,
we've had, are you familiar with David's Refuge?
Yes. David's Refuge, similar kind of idea. They
help caregivers for people who have sick family
members and same deal. It's just what you guys
are doing is so important because as you said,
when you have, especially a sick child, people
don't, you know, people think of, oh no, you
know, we've got to worry about the healthcare
and the medical and... No. I have to pay bills
this month. Can you contact this company? Can
you go grocery shopping? To have that kind of
stuff can make such a huge difference. I want
to talk a little bit about Liam and his involvement
at Syracuse University. How did that come about?
That's so awesome. I'm obviously always bleeding
orange. Of course. You know, but then we, you
know, Coach Beheim, you know, we reached out
to them through a friend and he was amazing.
So was, you know, Julie. They were great. We
told them, you know, we went through the inclusive
you program and then, you know, the one time,
you know, I took him with, you know, I took him,
he introduced him to everybody and he felt like
it was home for him. Yeah. I mean, like he hated
missing any practices. I'm like, what'd you do?
I clapped. I clapped. I'm like, that's awesome.
He goes, but just makes the students feel good,
like the players. You know what I mean? Finding
the good. Finding the good. Exactly. Although
his role wasn't that big. But just to be feeling
the sense of belonging. Because kids with special
needs, they need that. You know what I mean?
And they're aware. As much as you don't think,
they're aware of what goes on. So then after
Coach Beham retired, Coach Autry jumped in. And
Coach Autry was beyond incredible. because Liam
passed away while Coach Autry was coach. And,
you know, he they had their golf tournament one
year and they made a very generous donation for
us. You know, the Bayham Foundation has been
helping us like crazy. Also, Julie's been wonderful.
And so our orange connection has been great.
And, you know, it just it helped him. You know,
feel that he belongs to keep going to that, you
know, I mean, so so and so it was it was really
special. That's absolutely beautiful. Gosh, so
much I could ask. You know, when a family goes
through something like this, I mean, it changes
you, good or bad. You know, what are some of
the things that you learned from this whole experience
as a family? If you want to talk about that.
Yeah, I mean, you know, when he passed away,
completely unexpected because, I mean, Liam had
all these medical and it ended up being a brain
aneurysm. Yeah, I mean, I'm like... It was just
like we were and my wife and I were just like
Why like why did this you know? I mean, but then
we had two options We had the option of say,
you know what it is what it is We're done, you
know and just not do anything or say, you know
what we have the support group we have the means
to make a difference and that's what we're gonna
do and it's just I would have never in my wireless
imagine that I'd be sitting doing it podcast
or I'll be going talking in front of the The
staff at the inclusive you program and you know
with Ken Silverwood and under all these deals
professors It just brought me out of my shell
and it just showed me that you know what you
can really this If we want to do it, you can
do it Don't come up with excuses and I'm hoping
that would be like an example to my kids and
to our friends and their kids that there's It's
good to make a difference in this, you know and
change things for people around you if you can.
Yeah, that is absolutely beautiful and You know,
I couldn't agree more. How did... I don't remember
if we really touched on this. How did the Live
Like Liam organization start? How did... I know
you guys said we can make a difference, but I
know you said some families kind of gathered
around. You want to talk about that a little
bit? Yeah, so, I mean, a very close friend of
mine, you know, who used to call himself Liam's
mentor, but used to take him to YBR to put bets
on football games, which was awesome. But he
loved Liam very much and him and I after Liam
passed, I'm like, we cannot let this kid's name
go, you know what I mean? And he's like, I'm
with you, you know? And then another friend of
ours, we told him and he's like, I'm on board.
And then another friend, he's like, I'll help
you with the 501C3 to be a nonprofit. So it's
just like these people out of nowhere. And then
all of a sudden we reached out to like 15 people.
We said, we want to start this foundation. We
need to, you know, all of a sudden. I got $15
,000 in checks from 10 people. Oh my God. That's
how it all started. And then we're like, OK,
so then what are the events we want to do? So
we did a home run derby, the first home run derby
down at JD, Lindenfields. And it was nothing
more than you pay $22, you hit the ball, you
get gift cards, raffle. We ended up raising $7
,000 in three hours. That's insane. I mean, it's
as if it's self -propelled. We just put the idea
and things happen. It's just been amazing like
we did our first run. We had almost 600 runners,
you know the last year we raised $27 ,000 we
had the support and then every penny we're raising
is Going to these organizations We sometimes
paying out of our own pockets to buy supplies
and t -shirts and stuff like that Because we
don't want that money is not it's specifically
for these organizations. So so that's what I
mean, last year, more than 600 community members
came together to honor the life of Lee. I mean,
that number alone is outstanding. A couple more
questions. The syndrome is called deGeorge syndrome.
DeGeorge syndrome. I've never heard of that.
For those listening or watching, can you explain
a little bit more about what exactly that syndrome
is? Yeah, so technically, it's a chromosome deficiency,
chromosome 22. So we became pedical professionals.
I'm sure. I'm sure. Yeah. So your chromosomes
are like zippers. They connect. The teeth connect
together. And on the chromosome 22, it was like
this. It was separated. And with that, just like
the image they gave us at the hospital, but with
that 180 things, you have droopness of the lip,
palate issues, immune system, calcium deficiency.
There's so many things to list. And one of them
is a defective heart. You know what I mean? So
with Liam, Liam's heart was, as I said, was reversed.
So they had to put conduits. They had to take
a valve out, put an artificial valve. So he went
through quite a bit. Like his second surgery
was in the hospital for like 28 days. But he
lost back. No. If someone's listening and a family
member gets diagnosed with DeGeorge syndrome
and you're thinking, what? I've never even heard
of this. Do you have a recommendation on what
the first step should be, if you know anyone
that gets... Well, I mean, to be honest with
you, you know, the nurses are angels. Of course.
Yeah, I mean, so when Nolan is my other son,
when Liam was born, you know, I mean, the nurse
came to the room, it was just, we were there
for like, not even 24 hours, and his lips were
a little purple. And she's like, something is
not right. And then we end up, they brought him
to the cardiologist. And we became very good
friends. You know, pediatric cardiologist was
amazing. And they started doing some tests and
they found out that. So then we worked. There's,
you know, Dr. Sprinson, who does the research
on that. We did blood work to see if it's safe
for us to have more kids. And he's like, it's
nice. It was weird that one in two million get
that. And it just happened to Liam. So upstate
is probably is one of the best that can help
with things. Hopefully, nobody ever has to go
through it. But if they do, that's the place
to be. Yeah. That's where my brother was taken
care of. And this was the 1980s. And even then,
it was absolutely amazing what they did for us
and our family. So we've talked about the bad.
This is good news, York. Let's talk about the
good, Jalal. Live like Liam, run, walk. 9 a .m.
at Jamesville DeWitt High School on November
29th. Tell us about how people can get involved
or register. And also, what can they expect at
the Run Walk? Okay, so the Run Walk, it's, again,
it's not a race. Okay, we don't time it. We'll
have this year a shot clock just at the end,
just, you know, or I'm sorry, a clock, you know,
for people to see, like, how fast they finished.
It's all on the JD campus. The Walk is on the
football field. We're gonna have music. We're
gonna have, you know, there's a lot of donations
with food. We're gonna have a food truck there.
And... do which fire department's been kind enough.
They bring a fire truck. We have the American
flag and just music. And it's just very interactive.
You're doing the same loop twice, pretty much.
And everybody wears the number 22. They have
the running bibs. It's 22. So nobody's got numbers.
So we give you a T -shirt and we give you that
bib. And another detail I love about this is
there's two different mile. There's a mile walk
and there's a mile run. the mile walk three mile
run oh three mile run sorry yeah there's the
1 .22 mile walk and a 3 .22 mile run in honor
of the number 22 for liam i absolutely love that
and of course if you want to buy a t -shirt uh
22 dollars so yeah so what with the teachers
what we did is we had because we had to place
the order you know we had this deadline so we
had that if you sign up you know you'll get a
t -shirt we missed whoever missed the deadline
we might have some extras because we did beef
up the order a little bit. We have the package
pickup on Friday from 3 to 6 at JD High School
Main Gym. And then the day of the sign up, you
can still show up and sign up for the run. It's
only $22. And if we have extra t -shirts, we're
going to donate those. The other thing is with
the number 22 is everywhere, all the scoreboards
are all lit up with number 22 also. So wherever
you go, it's you know, it's there. So that's
beautiful, man. That's absolutely beautiful.
Before we go, I mean, I'm going to put the link
up here because it's a long one to say out loud,
but to sign up and register as a runner. Are
you guys also looking for volunteers still or
are you just looking for for runners? I mean,
right now, I mean, if we can never have enough
volunteers because I mean, it's just, you know,
there's a lot to manage. But as of now, I think
we're good at volunteers. We just want people
to just come join us. It's very emotional, but
it's very satisfying, too. And the vibe is great.
Like, we've seen people running into each other
that they haven't seen each other in a very long
time. So it's becoming more of a community event.
It's the second annual, correct? The second annual.
And we're hoping to continue it, you know, as
much as we can. And again, all the proceeds will
go to the organizations we're working with. So
we'd appreciate it. Ronald McDonald House. The
list goes on. All right, last but not least,
any other plugs you want to get out there? Any
other events? Anything about the Live Like Liam
organization in general that you want to... Yeah,
I mean, we do have, again, our two events, our
main events, and every year there's somebody
who is out of nowhere. They're like, let's have
an event for you. Like this year in the spring,
in the fall, there's a place called The Knee
Whiskey Bar. Yeah. and I do like my bourbons
so we were there and we just became friends with
the owner and they had this beautiful fundraiser
for us there so we will be if that thing was
going to happen again so we'll be letting people
know about it if there's really good stuff there
but we do have our home run derby And it's a
lot of fun. I mean, we had started first with
JD people and people from FM because of the,
you know, the close neighborhood together. But
this year we had travel softball teams. We had
kids coming from different schools. They were
participating and it just it was so entertaining.
And then when you have kids hitting 11 home runs
in a row. Yeah. And it's just so much fun. So
so these are the two main events that we do.
And you can find that it was live like Liam dot
org live like Liam dot org. We're on Instagram.
Live Like Liam FDM and on Facebook Live Like
Liam Foundation. And we do all our advertising
there and share our information. Well, Jalal
Zadby, it was an honor to have you here. My heart
is with you. Thank you. I understand. I do. Sadly,
I understand what goes on when a child is sick.
I'm so glad that you have the support of friends
and family and community. And you have our support
here at Good News York. Thank you. And you helped
us find the good today, and that's what this
show is about. So, Jalal Zagby, one of the co
-founders of Live Like Liam, LiveLikeLiam .org,
the Live Like Liam Run -Walk, November 29th,
9 a .m. at Jamesville DeWitt High School. We've
got the link. Put it up on the screen. I mean,
you heard the story. Please. Come be a part of
it. It's for an amazing cause. And help us find
the good, like Liam would have wanted. And with
that, we thank you for joining us on Good News
York, Monday through Thursday, 5 p .m. Eastern,
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at MikeBTV. We'll be back tomorrow with Good
News York. See you then.