April 9, 2025 • 37 mins
When a mother's intuition conflicts with medical opinion, lives hang in the balance. For Missy Ramirez, trusting her gut during her son's mysterious illness ultimately led to uncovering IPEX – an extremely rare autoimmune disorder affecting just 1 in 1.6 million people worldwide. Behind her N95 mask (worn to protect her immunocompromised son), Missy shares the harrowing journey from that first emergency room visit to becoming a powerhouse advocate for bone marrow registry diversity.
Unlike many immune disorders that weaken defenses, IPEX sends Jax's immune system into overdrive – a "Formula One race car" response that attacks not just infections but his own organs and tissues. The only cure? A blood stem cell transplant from a perfectly matched donor. But therein lies another challenge: patients of Latino heritage like Jax have less than a 50% chance of finding a compatible donor, compared to the 85-90% match rate for Caucasian patients.
Through tears and laughter, Missy reveals how this diagnosis transformed her into a fierce medical advocate and community organizer who has helped register over 7,000 potential donors to the Be The Match registry. Her philosophy is beautifully simple: "The universe provides what you give out." Despite watching her son fight for his life multiple times, she maintains infectious optimism and determination to help not just Jax, but countless families facing similar battles.
Between sharing wild stories from her pre-mom life (escaping a suspicious cab driver and surviving Woodstock '99), Missy delivers a powerful message about becoming a "walking hero" through a simple cheek swab. Text "Jax Ramirez PA" to 61474 to get your home testing kit, follow their journey on social media @BeTheMatchForJax, or simply share their story to help create a world where everyone has an equal chance at finding their lifesaving match.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
I bought tickets to Woodstock 99.
People were wildly unwell.
They had knocked over thePort-A-Johns.
They were sliding through thePort-A-John water I hit a red
light and she was like yappingin my ear about whatever it was
and I was like you know whatSounds like we're done here?
And she's like what do you mean?
I said you're out of thewedding.
I was like we got to get out ofhere.
So I jumped up front, pushedout the window with maybe a foot
(00:28):
, jumped out, got her out and wesprung the joint Welcome to
Mocktails or Messy.
Speaker 2 (00:33):
This is Ryan Frankofsky and Kelly Musgorski,
and we have in the studio todayone of our favorite.
I don't want to even give awaythe details about how we met,
but it's Missy Cuban Ramirez.
Cuban Ramirez, just Ramirez.
Let's be honest, missy Ramirez,she's hiding behind the mask.
(00:56):
Do you want to give us a littleinsight why we have to be in
the mask today?
Speaker 1 (01:00):
Yes, so my son Jax has a pretty rare autoimmune
disorder called IPEX and I staymasked and we stay generally
isolated to protect him from anyactual illness or virus.
Speaker 2 (01:13):
To be honest with you , Well, thank you for making the
time to sit down with us.
We are super excited to educatepeople on your son, jax, and
his you know journey, but alsowe want to learn a lot about
Missy today.
You know the mom behind theoperation, so thank you?
Speaker 1 (01:31):
Yes, right, I love that.
Yeah, nobody ever asked meabout me, so this is fun.
Speaker 2 (01:36):
Oh, for sure, and you're a character.
I've followed your TikTok, I'veseen your Instagram reels.
You definitely have that je nesais quoi for the camera.
Speaker 1 (01:46):
Oh, I like that too.
I like a little gassing upwhile I'm here.
Speaker 2 (01:50):
You know what I'm saying.
We wish we could see what youlook like, but for privacy
reasons and for your son'sautoimmune disease, we want to
make sure that you're protected.
So thank you for making thetime to come into the studio
protecting ourselves.
Next time we will have ourmasks as well.
It's cool, it's good.
Yeah, we're cool.
We're good Because we couldgrab them too.
Speaker 1 (02:10):
No, I'm totally cool.
I'm totally cool.
I spend all my life witheverybody who is masked or isn't
masked, but as long as I'mprotecting, I feel good about it
.
Speaker 2 (02:19):
Yes, yes, and that's an N95 mask too, it is See, I
know my stuff.
Speaker 1 (02:23):
You do, it's also recyclable.
That's important for me.
Speaker 2 (02:32):
Ooh, I like the sound of that, especially with all
these plastic and well, there'ssome glass in there.
Speaker 3 (02:34):
You know, We've got mostly glass and cans here that
we can recycle.
Speaker 2 (02:36):
Yeah, yeah.
So, Kelly, what are we drinkingtoday?
Speaker 3 (02:39):
This is the Dirty Pelican Spicy Margarita.
Dirty Pelican Spicy Margarita.
I have a little bit of tequilain mine.
Speaker 2 (02:46):
Yes, you got the Alto .
You got the Alto, and same withMissy.
How do you like this DirtyPelican Spicy Margarita?
Speaker 1 (02:55):
I love it, especially after a long day of work.
You know what I'm saying it'sthe perfect amount of spice.
Speaker 3 (03:01):
It's not too spicy.
Speaker 2 (03:02):
No, it's perfect.
Yes, and I'll give you a littlequick rundown.
I'm drinking the Dirty PelicanSpicy, skinny Margarita and I'm
adding in my tequila alternativeTrajo Spirits.
You remember Trajo?
He's the actor.
Oh, I do.
I mean, you know Trajo frommovies and shit.
(03:23):
How could you not?
He actually got sober about 10years ago.
I'm pretty sure.
I don't want to like be quotedfor that, but he started this,
like you know.
Zero proof tequila alternative.
It tastes amazing.
I got it.
I want you to try it at the endof the.
Speaker 1 (03:36):
Oh, I will, I would love to yeah.
Speaker 2 (03:38):
Maybe we'll do a shot .
Speaker 1 (03:39):
Let's do it yeah.
Speaker 2 (03:40):
Yeah, because you know I'm a mock tailor.
It's been over a year, but youknow enough about me.
Let's go into, let's dive deepinto Missy.
Speaker 1 (03:47):
Yeah, let's do it.
Yeah, but also congratulationson that.
Speaker 2 (03:50):
Oh well, thank you, let's cheers to that Cheers to
that Hi.
Nick.
Speaker 3 (03:54):
Yeah, let's fucking go.
Yeah.
Speaker 2 (04:05):
Okay, so we have some messy questions for Missy, just
to get to know her.
We're going to have a littlebit of fun today.
Yes, we're going to start offwith a little bit of educational
, funny, messy questions forMissy.
Speaker 3 (04:10):
You can't read these, right these are big enough.
Speaker 2 (04:14):
These are big enough.
She makes fun of me.
She's always been on my ass Ineed to get glasses.
I had them, I lost them.
Do you have glasses?
Speaker 1 (04:24):
I have contacts like I can read that barely.
You know what I'm saying, sowe're all right we're all doing
good.
Speaker 2 (04:30):
Yes, yes, no judgment here, missy, what we're gonna
just dive in okay what's themost trouble you have caused at
a wedding party or an event sothat's a great question.
Speaker 1 (04:49):
And it was actually, I guess maybe it was like
pre-wedding and it was my ownwedding yeah.
And I had invited some folks tobe part of my wedding party.
Speaker 2 (04:57):
Yeah.
Speaker 1 (04:58):
And frankly they were on my last damn nerve and I
said they were on your last damnnerve.
Speaker 2 (05:04):
They were.
What were they doing?
Speaker 1 (05:05):
Everything was a problem.
The dress was a problem, theshoes were a problem, the color
was a problem.
Speaker 3 (05:10):
My hair was a problem .
No, no, no no, that's right.
Speaker 1 (05:13):
And then I was driving on 19.
I'll never forget it.
I hit a red light and she waslike yapping in my ear about
whatever it was and I was likeyou know what sounds like we're
done here.
And she's like what do you mean?
I said you're out of thewedding and she was like you
can't be serious.
I was like, oh as hell, I amserious, you're done.
I was like if you want to read,I'll welcome you, but you're
(05:36):
done.
And she's like I'm not reading.
And she didn't come to thewedding.
Speaker 2 (05:38):
And that was that we haven't spoken to her.
Can we say that, yeah, okayyeah, fucker, what's up with
that?
Speaker 3 (05:45):
listen good for you, but I feel like you shouldn't
have been like having to drivearound that day.
Well, it was, it was pre.
Speaker 1 (05:53):
It was pre-wedding, but like I don't, care.
We were like planning and allthe things and she was just like
angry elf about everything andI was like we're done with your
energy you know what I mean.
Speaker 3 (06:02):
You did the right thing.
You did the right thing, yeah,yeah, yeah, yeah.
So that was like it was likewe're done with your energy.
You did the right thing.
You did the right thing.
Speaker 1 (06:07):
Yeah, yeah, yeah, yeah.
So that was like, it was like awhole thing you know what I
mean.
Speaker 2 (06:08):
It's fine If you could delete one regret from
your life.
What would it be, missy?
Speaker 1 (06:16):
Easy.
I was offered a job in Hawaiitwice and I turned it down.
Yeah.
Speaker 2 (06:22):
Salary wasn't good.
Speaker 1 (06:23):
I don't know.
I think I was like.
You know, when you're born andraised in Pittsburgh, you
sometimes stay in Pittsburgh.
Yeah, yeah, yeah, yeah, and wethink about that my husband and
I a lot, Because he was like,really devoted to thinking we
were going to buy, like thislittle house on stilts live off
the land.
Speaker 2 (06:39):
He was going to raise chickens we were going to eat
pineapple.
Speaker 1 (06:43):
I was gonna like be an educator and we were just
gonna be like real you knowbeachy vibe, and then I said, no
, we talk about that.
We talked about that thisweekend it's just like you know
what I mean.
Speaker 2 (06:56):
It's like that thing, like a what if?
Speaker 1 (06:59):
and then, like full circle, we would have been
closer to some of jack's'streatment in California which I
also think about.
Speaker 2 (07:07):
It's still a five-hour flight, it is, so I
mean, let's just think about it,you're five hours from
Pittsburgh.
Speaker 1 (07:14):
That's a great perspective.
Thank you for that.
Yes, I'm just giving you someinsight.
Speaker 2 (07:19):
Thank you, yeah, because as much as it feels so
close, you're like fuck it'sstill five hours.
Speaker 1 (07:24):
Yeah, yeah, yeah, yeah, so yeah.
Speaker 2 (07:26):
But I like that you, you know, still talk about it
because whatever it's magical,it could have happened, but you
know you're with your family.
I mean, there is somethingabout the Berg.
It might not be Hawaii.
Speaker 1 (07:37):
It might not be Hawaii.
Speaker 2 (07:39):
But you know what.
Speaker 1 (07:42):
The Berg has treated us so well, the Berg treats my
family, in particular because ofJack, so well, so like.
Speaker 3 (07:47):
I got to send some love to the black and gold.
Speaker 2 (07:49):
Yes, and it does suck you back in.
I will say I was gone for 10years and I came back and so was
he.
She didn't think she would comeback.
Speaker 1 (07:57):
Well, my brother came back too.
You know what I mean.
Oh my God.
Speaker 2 (08:00):
Can we quickly touch before we finish these questions
?
Oh my God, can we quickly touchbefore we finish these
questions?
I really love your brother andhis wife and, like when I see TJ
Cuban on Facebook, I'm like howthe F does, how have I not met
you before?
I know I mean now full circle.
I'm like you have the sameenergy.
You might be cooler, he'spretty fucking cool.
(08:21):
But I don't know, girl, youfucking walking down the street
and being like what's up, I'mlike is this a bitch like a
celeb?
She gives me main characterenergy.
Speaker 3 (08:33):
Yes.
Speaker 1 (08:34):
We're hanging out more often.
Speaker 3 (08:35):
Back story for the listeners we graduated with
Missy's brother.
Speaker 2 (08:40):
Yes, TJ Cuban.
Speaker 3 (08:42):
TJ's wife.
Speaker 2 (08:46):
And they were two of the nicest people in high school
.
Oh my god, they ended uptogether, so why wouldn't say
the nicest?
Speaker 3 (08:49):
they were so nice, they were the funniest I know I
have no I love them.
Speaker 1 (08:54):
I'm just thinking like oh, they could probably
answer some of these questions.
I know, you know what I'msaying.
Speaker 2 (09:00):
I know, I know.
So what is the most awkward,hilarious celebrity encounter?
Speaker 1 (09:07):
Oh gosh.
Speaker 2 (09:08):
Because I know you've met a couple with doing work
for your son.
Speaker 1 (09:13):
Yes, so well.
So sometimes main characterenergy kind of gets in my way.
And so we were so thePittsburgh Pirates set us up.
Every year they give us acharity box for Jax right at the
river so he can see the boatsgo by.
Speaker 2 (09:30):
That's amazing.
Speaker 1 (09:31):
Oh yeah, and we get to pick a game and we always
pick like the low-level games,right, like we're like.
It's not like high-impact,high-energy.
Speaker 2 (09:38):
Right.
Speaker 1 (09:39):
And so they give us this whole box and we had all
this food they feed us likethere's 20 of us, there's four,
okay.
And so we had all this extrafood.
And I looked down and CharlieBatch is down there.
And Charlie Batch is with abunch of kids I think he
might've been with Best of theBatch, his program and so I'm
sitting there with my husband.
I was like, hey, look, it'sCharlie Batch.
I'm like, hey, charlie.
(10:00):
I was like I have some extrafood up here, do you want it?
And he walks over and he's like, yeah, that's great.
So there I am loading hot dogsand hamburgers on paper plates
and I'm handing them to Charlieand as we're going, like it's
like we're age old friends, andI was like man, you had some
great runs on the Steelers, youknow what I mean?
And we're like hitting it backand forth.
And then we leave and all thekids are now eating hot dogs and
(10:24):
hamburgers which I felt reallygood about that and we leave and
my husband was like what wasthat?
He's like you're just like, hey, charlie, here's some hot dogs
on a paper plate.
And I was like, oh, that wasweird, huh.
Speaker 3 (10:34):
No, we love that.
Okay, well, that's good,because then I messaged him on
Instagram.
Speaker 1 (10:38):
I was like hey, you saw me at the pirate game.
I hope it wasn't weird.
I sent you hot dogs andhamburgers, which probably made
it weird.
No shame.
Speaker 2 (10:46):
No shame in your game and you have that like you got
like the real, like authentic.
You are 100% yourself, which Ilove.
That about you I can find thatout from your friend who
introduced us, and even justlike following your social
social media.
But what's the time you thoughtthis would be fun and it wasn't
(11:09):
I was actually telling thisstory today.
Speaker 1 (11:12):
So, uh, I was super into mute, I am still super into
music and I love just being outat concerts.
Speaker 2 (11:20):
Good, vibes good energy right.
Speaker 1 (11:22):
So I bought tickets to Woodstock 99.
Speaker 3 (11:25):
Do you know anything about Woodstock?
I do know.
Speaker 1 (11:28):
Yeah, it turned wild.
Speaker 3 (11:30):
She probably doesn't.
I don't.
That's why I'm being quiet.
Speaker 1 (11:33):
So Woodstock 99, it was in New York, it was three
days.
Speaker 2 (11:38):
They packed us in.
Speaker 1 (11:41):
They inflated every price.
People went ballistic.
People were starting fires.
So I'm standing there watchinglike I don't know the Red Hot
Chili Peppers.
They get pulled off stage.
I turn around, there's firesall around us.
Okay, people are blowing thingsup.
People were unwell and I waslike what are we going to do?
Unwell, people were wildlyunwell.
(12:03):
They had knocked over theport-a-johns.
They were sliding through theport-a-john water, which I'm not
sure everybody was thinkingthrough that yes.
Speaker 2 (12:11):
Yes On purpose?
Speaker 1 (12:12):
Yes, and so my friend and I were like this is it,
we're done.
And you know, I don't have acell phone, it's like 1999,
right.
And so we had to walk miles toget out of there.
We couldn't get back in.
All of our stuff was in a tentmiles away.
And so I did what any goodthinking like 19 year old would
(12:35):
do I ripped a piece of thewoodstock wall, we hopped in a
truck and we headed on home andso I show up.
I'm filthy dirty and my mom wasshowed up.
She saw us pull in early.
She opens the garage door,hands me a towel and was like
you're not coming in here,you're discussed and you're
going to like change down hereand you're going to be done.
It was the craziest experience,and so then the documentary
(12:58):
came out and I was watching it.
I was like mortified that I wasthere.
Speaker 2 (13:03):
I was like it looks even worse you know when you're
living it and then you rewatchit.
Speaker 3 (13:08):
Yes, I'm going to watch it now.
The.
Speaker 1 (13:10):
MTV poll, like where the guy sat.
They knocked it down.
People were so angry on howmuch everything cost and how
much people they like jammed inthat like everybody's energy was
off and it was bad.
Speaker 2 (13:25):
I know, know.
I mean I remember seeing alittle bit of that odd
documentary.
I wasn't there, but I do feellike it's a story to tell.
Speaker 1 (13:33):
You saw that shit like firsthand I got knocked
over in a mosh pit for throwingrage against the machine and I
found 20 bucks oh wait, say itagain.
Speaker 2 (13:42):
Yeah, so I got again.
Speaker 1 (13:42):
Yeah, so I got knocked over, so again mad
energy Got knocked over in amosh pit while we were there
during like a rage against themachine, sort of like moment
Boom hit the ground.
I was like, oh my gosh, here's20 bucks, and 20 bucks at
Woodstock was like that wasgetting you a water.
Speaker 3 (13:59):
That's it, but it was getting you a water.
Speaker 1 (14:09):
That's pretty good, like 25 years ago though but
yeah, some people die in moshpits.
But you found 20.
I found 20 bucks, that's good.
And we made it down to themcdonald's in rome, new york,
and got a water.
I called my mom from a payphone and I was like I called my
mom from a pay phone and I saidmom, it's not going well.
I was like I think you're onthe news.
She's like have fun.
I mean seriously, it was so bad.
Speaker 2 (14:31):
You guys are fucking hilarious.
The Cubans leave it to theCubans.
Have you ever accidentallyruined a relationship between
friends or family?
Speaker 1 (14:42):
Well, I mean to be fair, full circle, full circle.
That first story, like I nevertalked to like bestie, for the
rest he turned never again thankgod when I kicked her out of
the wed.
You know what I?
Speaker 2 (14:54):
mean, oh, you did, yeah, like when I kicked her day
over.
Speaker 1 (14:57):
No, not the day of maybe like a couple weeks before
.
Good for you may have had thedress and she may have had to
pay for it, but I mean, it iswhat it is.
You know what?
Speaker 2 (15:05):
I mean.
I mean, she does not deserve totreat her like bride friend to
be.
No.
Speaker 1 (15:10):
And she called me a bridezilla and I was like sis,
I'm not a bridezilla, you knowwhat I'm saying, I'm just tired
of dealing with your mouth.
Speaker 2 (15:16):
Yeah, skrrt.
I mean what, Honestly, you pickself-respect over putting up
with that bullshit?
Speaker 1 (15:23):
I was petrified for the day of because I didn't want
to listen to it, so I was justlike we're done.
Speaker 2 (15:29):
Good for you.
Cut the cord, be done, and youdon't have any animosity from
that.
Speaker 1 (15:33):
You know what?
No, I'm actually like you knowwhat Wasn't meant to be Toodaloo
.
You know what I mean.
Speaker 2 (15:45):
Toodaloo Deuces, yeah , peace.
I think we all need to educatesome people Like even like old
relationships or friends andfamily, just because you're
blood, like if they're notserving you At this stage of
your life, in our 30s, 40s, 50s,like get rid of them okay.
Speaker 3 (16:02):
So, missy, it was great to get to know you a
little bit.
That was fun yeah, um I thinkwhat we're all here for and like
.
More importantly, we want totalk about jacks, yeah let's
talk about jacks we're gonna getinto those questions for you.
Can you share more aboutjacks's journey from being a
healthy baby to being diagnosedwith ipAX?
(16:22):
What were some of the earlysigns that led to his diagnosis?
Speaker 1 (16:27):
Yeah.
So that's a journey.
That's a journey of a thousandmiles.
So Jax was born happy, healthy,checking all the boxes.
We were brand new parents, likeliving, like we thought we were
living our best sleepless lives, you know, and fast forward to
sleepless lives, you know andfast forward to it was
Thanksgiving and he was two anda half.
I had just had my son, lincoln.
(16:52):
So Jax is two and a half yearsolder than him.
Lincoln was a newborn and Ithought Jax was acting off but I
was like he had never been sickbefore.
So like, let's, let's, let'slive this out.
Maybe this is our first timeand I had, I remember so vividly
, calling the like the pediatricperson on call, because it's a
holiday, of course.
And they were like oh, you knowwhat, just like live it out, do
the vaporizer.
(17:12):
You know, keep them, keep themwell like, keep them like
comfortable.
And I thought, okay, but thisfeels weird, this feels
different.
And so next morning it's nowBlack Friday and we were going
to go get a Christmas tree and Iremember I said to my husband,
Pete, I was like something'swrong, like this isn't right.
So I put him in and we but itwas a skull blanket.
(17:32):
I love sugar skulls, like Ilove that.
Yeah, right, so he's wrapped inthis sugar skull blanket.
He had his little beanie on andthey saw us in the waiting room
and they came out to get us andthere's like tons of kids there
(17:53):
and they got us first.
And I thought that was weirdbecause we had just shown up and
they were like, hey, we, wewant to check your son's blood
sugar.
And I was like what do you mean?
And they were like yeah, wethink he might have type one
diabetes.
I was like no, he doesn't.
I was like we are unwell here,like this is not how this
adventure is going.
I think he has a virus.
Turns out, they put us in anambulance and sent us to
(18:14):
Children's Hospital.
I was there, he.
By the time we got there heended up in a coma because they
thought he had almost they hadto protect swelling of the brain
.
His body was giving out on himand so that was our first
adventure into finding outeventually that that was all
caused by ipex.
So he resulted in having type 1diabetes and we had this little
(18:38):
newborn at home.
We ended up spending like 14 or17 days in the hospital.
I'm like sleeping on achildren's hospital and they're
like floor pull out bed with anursing a newborn and taking
care of a two and a half yearold who, quite honestly, felt
like two newborns, because wealready had, you know, we had to
learn how to take care of Jaxnow, and then we had Lincoln,
(18:59):
and and then after that the balljust kept rolling in very bad
ways for him.
That resulted in so manyhospitalizations.
I watched him almost lose hislife so many times, a majority
(19:24):
of his time, one of the times hewas in a coma at the hospital
with him and those beeps, Ithink just really it's a lot for
people to manage, and so youknow, fast forward to all of
those things.
we had finally met some docs andthey were like hey, this
doesn't feel good.
And I said, right, everybody'sbeen telling me it's bad luck.
I was like this is way morethan bad luck.
Folks Like we need an answer,and that's how we ended up
(19:47):
finding out that he had IPEX.
But that was a long time to gobefore we got there.
Speaker 2 (19:52):
Do you have any blame for people not being able to
identify that sooner?
Speaker 1 (19:58):
I think that I don't have blame that they didn't find
it.
I have blame they didn't listento me.
Because all along I was likethis is more than bad luck, like
I have two kids now and oneresponds far differently than
the other, and I kept asking,like people that had kids with
type one diabetes, I was like,is this how they react when
(20:18):
they're sick?
And they're like no, no,they're sick and they're like no
, no.
And I will never forget amedical professional had said to
me you know, sometimes thiskind of thing happens type 1
diabetes, when a reallyemotional, traumatic event
occurs.
And I'm holding Lincoln as anewborn and I was like what are
you saying?
They're like, you know, likethe birth of a sibling, and I
(20:41):
was like, wow, you just put in anew mom's head that you're my
son, my older son is sickbecause I had a baby, and that
is just yeah, we.
That was my first venture inunderstanding that I need to be
a really big voice and a reallybig advocate in my family's life
(21:03):
.
Speaker 2 (21:03):
Absolutely.
Speaker 1 (21:09):
Yes, I mean, we've heard navigating the healthcare
system can be very challenging.
Yes, and, and you know,teaching hospitals are awesome
because it teaches folks how tobe great professionals, but also
you have to navigate that pieceyou know when you see your son
dying and they're like no, no,we're not, we're, we're, no,
we're moving on and we need toget some folks in here that are
skilled and you have to trustyour gut.
(21:31):
At the end of the day, I telleveryone, even the kids, anybody
that I come in contact withtrust your gut, because it's
probably right, and had I not, Ithink I would have lost Jax a
long time ago.
Speaker 3 (21:43):
I do think, like a mother always knows.
So could you go into a littlemore detail about IPEX and its
daily effects on Jax's life andsome of the symptoms and
challenges he faces?
Speaker 1 (21:58):
Yeah, so IPEX is a really rare autoimmune disorder.
It's life-threatening.
One in 1.6 million people haveit.
I have it actually, and so theneat thing about science is that
you know women have two exes,men only have one, and so his
shows the symptoms, my ex wrapsit up and is quiet, so I won't
ever be ill or unwell, and infact, had I not had boys, I
(22:21):
would have never known I hadIPEX.
Speaker 2 (22:23):
Right.
Speaker 1 (22:24):
Yeah, and in fact it's in most of the females in
my family is what we've foundout, so and Lincoln does not.
Lincoln does not have IPEX.
Yeah, so we had to get himtested to see one if he had IPEX
and two if he was a match,because the only known cure is a
blood stem cell transplant or abone marrow transplant, and so
(22:48):
we had to get him tested forthat.
And I always say I can'tcelebrate, he doesn't have it,
because I mean, how can youcelebrate it?
Speaker 2 (22:51):
It's just like check the box we don't have to deal
with.
That is really what that is.
Speaker 1 (22:54):
But yeah, ipex is funny because it creates all of
these autoimmune disorders.
So a little tiny virus isreally exacerbated for Jack.
So he's not under like peoplethink that he has no immune
system.
He has like Mach 10 race carimmune system.
He's like Formula One.
So once something comes in,it's like I'm obliterating that
(23:14):
and whatever it's in his way.
So it's going to be organs andtissues and things like that so
that's why he continues toacquire autoimmune disorders, so
little viruses can have reallylong lasting, big impacts.
Because he has myastheniagravis too, which affects the
eyes and the nose and thebreathing and the chewing and
all of the things, and usuallythat's in the elderly, not a
(23:38):
five year old, because he wasdiagnosed with that at five, so
it's just been a journey.
Speaker 2 (23:44):
And you still remain this high, optimistic, positive
mother, positive psychologist,if I may say, and just like you
really do really shed thisbright light that people want to
be around you and this issomething that you need to
educate everyone about, and thisis I mean, this is part of your
being.
I could feel it.
Speaker 1 (24:06):
Yeah, you know it's about the universe provides.
And so what you give out intothe universe, you're going to
get back.
That's what I really believe.
And so the you give out intothe universe, you're going to
get back.
That's what I really believe.
And so the more that I can beout there and I'm not going to
just be an advocate for Jax, I'mgoing to talk about the
disparities on the bone marrowor the stem cell registry.
I'm going to talk about thedisparities in the care that
(24:29):
we've received, because mylittle story can impact many,
many people.
We've saved so many lives inthe work that I've done so far.
You know we've registered over7,000 folks in Jax's honor.
I get countless calls that mycousin signed up for Jax, but he
got a call that he's a matchfor somebody else.
Tj was a match for somebody inFlorida.
(24:49):
He ended up not going the wholeway because they found somebody
else that was a closer match.
But again, lives are beingsaved.
And so you know what I'm goingto put out.
I'm going to get back what Iput out.
And so if I can put out graceand love and support and
advocacy for other families whoare experiencing the heartache I
have, then I'm going to getthat back twofold.
Speaker 3 (25:09):
Right.
So, to go into it a little more.
What does Jax need to undergofor the bone marrow transplant
and why is finding a matchspecifically challenging due to
his Latino background?
Speaker 1 (25:22):
Yeah.
So the registry as it standstoday is not incredibly diverse.
So if you are Caucasian 85, 90%chance you're going to get a
match.
Anybody else like Hispanic andLatino and that's 100% Hispanic
and Latino you have less than a50% chance.
Black Americans less than a 30%chance, and it's all because
(25:43):
there's not enough diversity onthe drive as it stands.
And so my goal is to one find amatch for Jax, but, two, give
folks a voice.
Every person should have amatch, right.
Every person should have asecond chance at life, and they
deserve that as humans.
And so I'm in thoseunderrepresented communities
(26:04):
educating them on why theyshould be on the match, because
there's a lot of medicaltrepidation for those
underrepresented communities,right, they have been treated
poorly in the past, and so it'sgetting them to understand
you're joining to help yourcommunity, you're raising up
your community, you're savingyour neighbors, you're saving
your family members, you'resaving other communities like
(26:27):
yours, right?
So get on the registry and saveyourselves, because it's all
about saving ourselves.
Speaker 3 (26:32):
Yeah, yeah, I mean you're talking about how like
important community is.
Are there any like upliftingstories for the community?
I know it's a small one rightnow, so many yeah.
Speaker 1 (26:45):
So our community is really, really big.
So we've held events all overthe country, including Puerto
Rico and Mexico.
But even just for my family,like the Pirates I talked about,
they give us a charity boxevery year.
They do so much for Jax.
They send him like Christmascards and gift cards and little
(27:05):
presents.
I mean, who are we?
You?
Speaker 2 (27:08):
know what I mean.
That's what I'm always like whoare we?
Speaker 1 (27:10):
Mark Reckie.
We met Mark Reckie at one ofour events and he was like you
know what I can do?
Sid the Kid, we're going to gethim a jersey.
So he sent Jax a jersey.
Jax's face, like it, showed up.
We got home from Californiabecause I entered Jax in a
clinical trial to help save him,because we haven't been able to
do anything else otherwise.
(27:31):
So this jersey shows up when wecome home from California.
He was just beaming becauseit's just us in essence, right,
but like all of these people dothese beautiful things, it's
just little drops in a hugebucket of hope and love.
I'm part of the Rotary Clubbecause, again, giving back is
(27:53):
really important to me.
I ask a lot of people to do alot of things for me and so
giving back is part of that.
But we took over a bar,actually in my town and all the
Rotary members were.
I was a bartender and we wereservers and all the proceeds
went back to Jax.
I mean, these people are comingup with these events to help
spread the word and get peopleon the registry and and
fundraise for us to be able togo to California and go to
(28:16):
Stanford.
Well, Lucille PackardChildren's Hospital will be part
of Stanford University trial,just to help do something.
And they're like, but it's justlittle.
I'm like it's not just little.
These are huge acts of kindness.
Speaker 2 (28:29):
Absolutely.
And what was the bar that youguys had?
Shoebrew, shoebrew, okay,shoebrew, okay, yeah, shoebrew
right in our town of Zillianople.
Speaker 1 (28:36):
We overtook it.
We were all the servers andbartenders and everything.
Speaker 3 (28:39):
I loved it.
Speaker 1 (28:39):
I was like oh, I can do this.
I loved sitting behind that bartalking to everybody hearing
their stories.
They were excited to see me youknow, serve them a little hot
pretzel and a cocktail.
Speaker 2 (28:51):
Definitely that energy is infectious.
Speaker 3 (28:56):
Yeah, it was fun.
Yeah, what would you like tosay to listeners who might be
inspired to join the Be A Matchregistry or support families
like yours?
Speaker 1 (29:04):
I would say never turn down the opportunity to be
a walking hero.
You know, I think that if youcan give the gift of life, why
not?
And it's such an easy concept.
It's the swab of a cheek, andwhen you hear bone marrow, it's
now really about blood stem celland that's just like a plasma
draw.
Speaker 2 (29:24):
That's just blood.
Speaker 3 (29:26):
They're just taking blood and taking the plasma from
it.
That's all it is.
Speaker 1 (29:29):
Yeah yeah, they're taking the stem cells from it,
so it goes through a centrifuge.
You know it's like over thecourse of a couple hours.
Be the Match is now an MDP.
They pay for everything.
They'll pay for your dog sitter, cat sitter.
They will pay for all your food, room and board, if you have to
go somewhere, if you have to doanything overnight.
No stone unturned to help savea life.
Speaker 2 (29:50):
Why not?
That's amazing.
Speaker 1 (29:55):
Yeah, it's an incredible thing and you know
you could get the call.
You may never get the call.
I know somebody that saved twolives personally, I mean that's
like that's the gift, right.
Speaker 2 (30:02):
That's it.
That's, that's the, and yourbrother was going to as well.
Yeah, Somebody he was.
Speaker 1 (30:07):
He was.
He went through the whole kitand caboodle because they do a
physical for you, they do someblood labs just to make sure
you're healthy enough to todonate, and then ended up it was
a female from florida and youknow it really comes down to a
lot of nuance and just this onelady had an edge on tj.
Speaker 2 (30:26):
But they said to him you know, we might call you back
if this doesn't work now let meask you this why were the two
matches for Jax not what areyour?
You don't really know why theyweren't able to follow through.
Speaker 1 (30:39):
I don't, I suspect.
So I suspect that they werejust became largely unavailable.
So, one of the events that wedid.
We were so fortunate to be ableto do the shell plant in Beaver
and that was a huge diverseopportunity.
There was people from all over,from Puerto Rico, from Mexico,
(31:01):
from the Dominican, fromGuatemala, and they were all
here working at the shell plant.
And the lawyers when I wastalking with them, they were
like we don't usually do this.
I'm like but come on, think ofall the lives you can save, they
let us in and the company.
Then they gave them all bonusesand it was a huge event.
(31:22):
We had over 700 people join andI think by the time their name
hit they probably were left theUnited States and we couldn't
find them.
Speaker 2 (31:29):
Okay, because we want to be pushing this message, we
want to get involved.
We want to be pushing thismessage, we want to get involved
.
We might not be a match, butwhy would we not be able to, you
know, get involved and testourselves?
For and you know being like anadvocate for you know, not only
Jax, but, like you said, there's.
So why not give an opportunityto save a life?
Speaker 1 (31:50):
And it's really so easy, and I think, even just
sharing the story.
So that's what I always say, ifnothing else.
If you know, people are alwayslike needles.
I'm afraid of needles, I'mafraid of this, I can't do this,
and I'm like listen, share hisstory, talk about it, because
he's not the only one that needsthis.
Right.
And so if it becomes just thiscommonplace thing where we all
(32:10):
were just like, oh yeah, we cando that, or oh yeah, I know
somebody who might be able tohelp in this way, you know six
degrees of what is it?
Six degrees of Kevin Bacon,somebody knows somebody.
Speaker 2 (32:20):
We're always going to be able to help somebody, you
know exactly.
Speaker 1 (32:24):
It's just about spreading love in the word.
Speaker 2 (32:26):
Now tell us what you are.
You go ahead, kelly.
Go ahead, tell us what yourmessy debauch, since it is in
line with, mocktails are messyit is what's your messy is
debaucherous, crazy drunkencollege story for us all right.
Speaker 1 (32:43):
Well, I talked about this one today too, because I
was like running it by a fewpeople.
You know what I mean.
I was like is this good?
So we before ubers were cabs.
Little known fact, right.
Speaker 3 (32:56):
And so I was of the cab era.
Speaker 1 (32:59):
And so I used to take cabs all over the place, and so
I took a cab with my frienddown to the South side, and then
we were heading back to Oaklandto just continue the day.
Speaker 2 (33:09):
Right, you were a pit girl.
Speaker 1 (33:11):
Yeah, pit is it H-T-P .
Oh shit, pit is it, pit is it.
Speaker 2 (33:15):
H-t-p.
Oh shit, yeah, yeah, pit is it,pit is it.
Let's fucking go yeah let's go,so anyway.
Speaker 1 (33:19):
So, heading back, and I felt like the cab driver was
taking a long way, a long wayaround, and I thought this is
weird, but again, there was alot at play.
So we end up circling aroundand he pulls into a driveway
that was not our finaldestination and he gets out and
(33:41):
locks the doors and we were likeno, no, no, no, no, no, no.
Yeah, so don't worry, it's agreat ending.
Speaker 2 (33:51):
So he leaves.
Speaker 1 (33:52):
And I say to my friend I was like like we got to
get out of here but the thedoors lock from the inside.
So I jumped up front, tookmatters into my own hands
because he had the keys pushedout the window with maybe a foot
jumped out, got her out and wesprung the joint.
Speaker 2 (34:08):
So we go.
Speaker 1 (34:09):
We ran to the next destination and they were like
what's going on?
Because of course we'd come in.
We're like main characterenergy.
You know I didn't enter justlike it was any old day, right?
So I tell them what happened.
The dude shows up.
So they ended up having to callthe police and it was a whole
thing.
It ended well.
Was he trying to kidnap you?
(34:31):
I don't know.
I mean, the next day I reallyhad to reflect on that and be
like, was I?
Speaker 3 (34:36):
being dramatic.
No, I would have done the samething.
Speaker 2 (34:38):
Oh, my God.
Speaker 3 (34:40):
Did you have like heels on?
You don't want to be taken outof the boot Because it was
winter.
Speaker 2 (34:44):
So you know what I mean Womp out of wind.
Oh my God, yeah.
Speaker 1 (34:50):
That is horrifying, yeah, but also I did, I have to
be honest.
The next day we sat on thecouch for a long time thinking
about that.
And I was like was that alittle like a little, a little
mishap, a little mix up incommunication?
Speaker 3 (35:06):
I don't know, but it ended well, makes you wonder
yeah, wow, that is reallysomething, that's a good story.
Speaker 2 (35:13):
That might be our best one I know, and I didn't
mean to cut you off.
Speaker 3 (35:17):
That's okay.
Yeah, how can people to wrap uphere, how can people stay
updated on Jax's journey andhelp spread awareness?
Speaker 1 (35:26):
Yeah, so if they want to join the registry, you can
get a kit sent to your home andall they have to do is text Jax
Ramirez, pa to 61474.
Find us at any old event.
I'll be at Pitt this Saturday.
Speaker 2 (35:39):
What's the number?
Speaker 1 (35:40):
61474.
So it's Jax Ramirez, pa to61474.
They can follow us on socialmedia.
I'm incredibly active.
Speaker 2 (35:50):
Yes, she is.
Speaker 1 (35:51):
She's good to follow oh thanks, yeah, so it's at Be
the match for jacks on instagramand facebook, and then jacks
needs a hero on tiktok, whereyou might see me, like you know,
showcasing a few fun items soeasy to remember at find the mat
or be the match for jacks bethe match for jacks, and that's
j-a-x j-a-x and then jacks j-a-xhero.
Speaker 2 (36:12):
Nice.
Speaker 3 (36:14):
Missy, you are such a bright light.
Thank you for being here.
We want to be here for you.
You're very special.
You're a very special person.
We can tell right.
Speaker 2 (36:23):
Of course, not just the main character.
You're definitely meant to bein this position and help others
, including your son.
And we want to give back asmuch as you do, so thank you for
inspiring us.
Speaker 1 (36:37):
Yeah, thank you.
Thanks for letting me be here.
This was like a bucket listitem, so check it.
Oh my God.
Speaker 2 (36:42):
I want to get you started, you and maybe your
buddy.
Speaker 1 (36:45):
Let's do it.
I think we might have a journeyin this place.
Speaker 2 (36:48):
I know we might have some production assistants
involved Cheers yes, honey, youknow some production assistants
involved, Cheers yes honey.
Speaker 1 (36:55):
Thanks for watching Mocktails.
Or Messy with Missy.
From Missy.
Yeah, missy Woo, let's go Allthe M's right.
It was a tongue twister.
Speaker 2 (37:04):
Oh, for sure.
Yeah, it is For sure.
Thank you guys for watching.
We're so happy to have Missy inthe studio.
This is Ryan Frankofsky andKelly Musgorski.
Cheers, cheers, cheers.
I bought tickets to Woodstock 99.
People were wildly unwell.
They had knocked over thePort-A-Johns.
They were sliding through thePort-A-John water I hit a red
light and she was like yappingin my ear about whatever it was
and I was like you know whatSounds like we're done here?
And she's like what do you mean?
I said you're out of thewedding.
I was like we got to get out ofhere.
So I jumped up front, pushedout the window with maybe a foot
(00:28):
, jumped out, got her out and wesprung the joint Welcome to
Mocktails or Messy.
Speaker 2 (00:33):
This is Ryan Frankofsky and Kelly Musgorski,
and we have in the studio todayone of our favorite.
I don't want to even give awaythe details about how we met,
but it's Missy Cuban Ramirez.
Cuban Ramirez, just Ramirez.
Let's be honest, missy Ramirez,she's hiding behind the mask.
(00:56):
Do you want to give us a littleinsight why we have to be in
the mask today?
Speaker 1 (01:00):
Yes, so my son Jax has a pretty rare autoimmune
disorder called IPEX and I staymasked and we stay generally
isolated to protect him from anyactual illness or virus.
Speaker 2 (01:13):
To be honest with you , Well, thank you for making the
time to sit down with us.
We are super excited to educatepeople on your son, jax, and
his you know journey, but alsowe want to learn a lot about
Missy today.
You know the mom behind theoperation, so thank you?
Speaker 1 (01:31):
Yes, right, I love that.
Yeah, nobody ever asked meabout me, so this is fun.
Speaker 2 (01:36):
Oh, for sure, and you're a character.
I've followed your TikTok, I'veseen your Instagram reels.
You definitely have that je nesais quoi for the camera.
Speaker 1 (01:46):
Oh, I like that too.
I like a little gassing upwhile I'm here.
Speaker 2 (01:50):
You know what I'm saying.
We wish we could see what youlook like, but for privacy
reasons and for your son'sautoimmune disease, we want to
make sure that you're protected.
So thank you for making thetime to come into the studio
protecting ourselves.
Next time we will have ourmasks as well.
It's cool, it's good.
Yeah, we're cool.
We're good Because we couldgrab them too.
Speaker 1 (02:10):
No, I'm totally cool.
I'm totally cool.
I spend all my life witheverybody who is masked or isn't
masked, but as long as I'mprotecting, I feel good about it
.
Speaker 2 (02:19):
Yes, yes, and that's an N95 mask too, it is See, I
know my stuff.
Speaker 1 (02:23):
You do, it's also recyclable.
That's important for me.
Speaker 2 (02:32):
Ooh, I like the sound of that, especially with all
these plastic and well, there'ssome glass in there.
Speaker 3 (02:34):
You know, We've got mostly glass and cans here that
we can recycle.
Speaker 2 (02:36):
Yeah, yeah.
So, Kelly, what are we drinkingtoday?
Speaker 3 (02:39):
This is the Dirty Pelican Spicy Margarita.
Dirty Pelican Spicy Margarita.
I have a little bit of tequilain mine.
Speaker 2 (02:46):
Yes, you got the Alto .
You got the Alto, and same withMissy.
How do you like this DirtyPelican Spicy Margarita?
Speaker 1 (02:55):
I love it, especially after a long day of work.
You know what I'm saying it'sthe perfect amount of spice.
Speaker 3 (03:01):
It's not too spicy.
Speaker 2 (03:02):
No, it's perfect.
Yes, and I'll give you a littlequick rundown.
I'm drinking the Dirty PelicanSpicy, skinny Margarita and I'm
adding in my tequila alternativeTrajo Spirits.
You remember Trajo?
He's the actor.
Oh, I do.
I mean, you know Trajo frommovies and shit.
(03:23):
How could you not?
He actually got sober about 10years ago.
I'm pretty sure.
I don't want to like be quotedfor that, but he started this,
like you know.
Zero proof tequila alternative.
It tastes amazing.
I got it.
I want you to try it at the endof the.
Speaker 1 (03:36):
Oh, I will, I would love to yeah.
Speaker 2 (03:38):
Maybe we'll do a shot .
Speaker 1 (03:39):
Let's do it yeah.
Speaker 2 (03:40):
Yeah, because you know I'm a mock tailor.
It's been over a year, but youknow enough about me.
Let's go into, let's dive deepinto Missy.
Speaker 1 (03:47):
Yeah, let's do it.
Yeah, but also congratulationson that.
Speaker 2 (03:50):
Oh well, thank you, let's cheers to that Cheers to
that Hi.
Nick.
Speaker 3 (03:54):
Yeah, let's fucking go.
Yeah.
Speaker 2 (04:05):
Okay, so we have some messy questions for Missy, just
to get to know her.
We're going to have a littlebit of fun today.
Yes, we're going to start offwith a little bit of educational
, funny, messy questions forMissy.
Speaker 3 (04:10):
You can't read these, right these are big enough.
Speaker 2 (04:14):
These are big enough.
She makes fun of me.
She's always been on my ass Ineed to get glasses.
I had them, I lost them.
Do you have glasses?
Speaker 1 (04:24):
I have contacts like I can read that barely.
You know what I'm saying, sowe're all right we're all doing
good.
Speaker 2 (04:30):
Yes, yes, no judgment here, missy, what we're gonna
just dive in okay what's themost trouble you have caused at
a wedding party or an event sothat's a great question.
Speaker 1 (04:49):
And it was actually, I guess maybe it was like
pre-wedding and it was my ownwedding yeah.
And I had invited some folks tobe part of my wedding party.
Speaker 2 (04:57):
Yeah.
Speaker 1 (04:58):
And frankly they were on my last damn nerve and I
said they were on your last damnnerve.
Speaker 2 (05:04):
They were.
What were they doing?
Speaker 1 (05:05):
Everything was a problem.
The dress was a problem, theshoes were a problem, the color
was a problem.
Speaker 3 (05:10):
My hair was a problem .
No, no, no no, that's right.
Speaker 1 (05:13):
And then I was driving on 19.
I'll never forget it.
I hit a red light and she waslike yapping in my ear about
whatever it was and I was likeyou know what sounds like we're
done here.
And she's like what do you mean?
I said you're out of thewedding and she was like you
can't be serious.
I was like, oh as hell, I amserious, you're done.
I was like if you want to read,I'll welcome you, but you're
(05:36):
done.
And she's like I'm not reading.
And she didn't come to thewedding.
Speaker 2 (05:38):
And that was that we haven't spoken to her.
Can we say that, yeah, okayyeah, fucker, what's up with
that?
Speaker 3 (05:45):
listen good for you, but I feel like you shouldn't
have been like having to drivearound that day.
Well, it was, it was pre.
Speaker 1 (05:53):
It was pre-wedding, but like I don't, care.
We were like planning and allthe things and she was just like
angry elf about everything andI was like we're done with your
energy you know what I mean.
Speaker 3 (06:02):
You did the right thing.
You did the right thing, yeah,yeah, yeah, yeah.
So that was like it was likewe're done with your energy.
You did the right thing.
You did the right thing.
Speaker 1 (06:07):
Yeah, yeah, yeah, yeah.
So that was like, it was like awhole thing you know what I
mean.
Speaker 2 (06:08):
It's fine If you could delete one regret from
your life.
What would it be, missy?
Speaker 1 (06:16):
Easy.
I was offered a job in Hawaiitwice and I turned it down.
Yeah.
Speaker 2 (06:22):
Salary wasn't good.
Speaker 1 (06:23):
I don't know.
I think I was like.
You know, when you're born andraised in Pittsburgh, you
sometimes stay in Pittsburgh.
Yeah, yeah, yeah, yeah, and wethink about that my husband and
I a lot, Because he was like,really devoted to thinking we
were going to buy, like thislittle house on stilts live off
the land.
Speaker 2 (06:39):
He was going to raise chickens we were going to eat
pineapple.
Speaker 1 (06:43):
I was gonna like be an educator and we were just
gonna be like real you knowbeachy vibe, and then I said, no
, we talk about that.
We talked about that thisweekend it's just like you know
what I mean.
Speaker 2 (06:56):
It's like that thing, like a what if?
Speaker 1 (06:59):
and then, like full circle, we would have been
closer to some of jack's'streatment in California which I
also think about.
Speaker 2 (07:07):
It's still a five-hour flight, it is, so I
mean, let's just think about it,you're five hours from
Pittsburgh.
Speaker 1 (07:14):
That's a great perspective.
Thank you for that.
Yes, I'm just giving you someinsight.
Speaker 2 (07:19):
Thank you, yeah, because as much as it feels so
close, you're like fuck it'sstill five hours.
Speaker 1 (07:24):
Yeah, yeah, yeah, yeah, so yeah.
Speaker 2 (07:26):
But I like that you, you know, still talk about it
because whatever it's magical,it could have happened, but you
know you're with your family.
I mean, there is somethingabout the Berg.
It might not be Hawaii.
Speaker 1 (07:37):
It might not be Hawaii.
Speaker 2 (07:39):
But you know what.
Speaker 1 (07:42):
The Berg has treated us so well, the Berg treats my
family, in particular because ofJack, so well, so like.
Speaker 3 (07:47):
I got to send some love to the black and gold.
Speaker 2 (07:49):
Yes, and it does suck you back in.
I will say I was gone for 10years and I came back and so was
he.
She didn't think she would comeback.
Speaker 1 (07:57):
Well, my brother came back too.
You know what I mean.
Oh my God.
Speaker 2 (08:00):
Can we quickly touch before we finish these questions
?
Oh my God, can we quickly touchbefore we finish these
questions?
I really love your brother andhis wife and, like when I see TJ
Cuban on Facebook, I'm like howthe F does, how have I not met
you before?
I know I mean now full circle.
I'm like you have the sameenergy.
You might be cooler, he'spretty fucking cool.
(08:21):
But I don't know, girl, youfucking walking down the street
and being like what's up, I'mlike is this a bitch like a
celeb?
She gives me main characterenergy.
Speaker 3 (08:33):
Yes.
Speaker 1 (08:34):
We're hanging out more often.
Speaker 3 (08:35):
Back story for the listeners we graduated with
Missy's brother.
Speaker 2 (08:40):
Yes, TJ Cuban.
Speaker 3 (08:42):
TJ's wife.
Speaker 2 (08:46):
And they were two of the nicest people in high school
.
Oh my god, they ended uptogether, so why wouldn't say
the nicest?
Speaker 3 (08:49):
they were so nice, they were the funniest I know I
have no I love them.
Speaker 1 (08:54):
I'm just thinking like oh, they could probably
answer some of these questions.
I know, you know what I'msaying.
Speaker 2 (09:00):
I know, I know.
So what is the most awkward,hilarious celebrity encounter?
Speaker 1 (09:07):
Oh gosh.
Speaker 2 (09:08):
Because I know you've met a couple with doing work
for your son.
Speaker 1 (09:13):
Yes, so well.
So sometimes main characterenergy kind of gets in my way.
And so we were so thePittsburgh Pirates set us up.
Every year they give us acharity box for Jax right at the
river so he can see the boatsgo by.
Speaker 2 (09:30):
That's amazing.
Speaker 1 (09:31):
Oh yeah, and we get to pick a game and we always
pick like the low-level games,right, like we're like.
It's not like high-impact,high-energy.
Speaker 2 (09:38):
Right.
Speaker 1 (09:39):
And so they give us this whole box and we had all
this food they feed us likethere's 20 of us, there's four,
okay.
And so we had all this extrafood.
And I looked down and CharlieBatch is down there.
And Charlie Batch is with abunch of kids I think he
might've been with Best of theBatch, his program and so I'm
sitting there with my husband.
I was like, hey, look, it'sCharlie Batch.
I'm like, hey, charlie.
(10:00):
I was like I have some extrafood up here, do you want it?
And he walks over and he's like, yeah, that's great.
So there I am loading hot dogsand hamburgers on paper plates
and I'm handing them to Charlieand as we're going, like it's
like we're age old friends, andI was like man, you had some
great runs on the Steelers, youknow what I mean?
And we're like hitting it backand forth.
And then we leave and all thekids are now eating hot dogs and
(10:24):
hamburgers which I felt reallygood about that and we leave and
my husband was like what wasthat?
He's like you're just like, hey, charlie, here's some hot dogs
on a paper plate.
And I was like, oh, that wasweird, huh.
Speaker 3 (10:34):
No, we love that.
Okay, well, that's good,because then I messaged him on
Instagram.
Speaker 1 (10:38):
I was like hey, you saw me at the pirate game.
I hope it wasn't weird.
I sent you hot dogs andhamburgers, which probably made
it weird.
No shame.
Speaker 2 (10:46):
No shame in your game and you have that like you got
like the real, like authentic.
You are 100% yourself, which Ilove.
That about you I can find thatout from your friend who
introduced us, and even justlike following your social
social media.
But what's the time you thoughtthis would be fun and it wasn't
(11:09):
I was actually telling thisstory today.
Speaker 1 (11:12):
So, uh, I was super into mute, I am still super into
music and I love just being outat concerts.
Speaker 2 (11:20):
Good, vibes good energy right.
Speaker 1 (11:22):
So I bought tickets to Woodstock 99.
Speaker 3 (11:25):
Do you know anything about Woodstock?
I do know.
Speaker 1 (11:28):
Yeah, it turned wild.
Speaker 3 (11:30):
She probably doesn't.
I don't.
That's why I'm being quiet.
Speaker 1 (11:33):
So Woodstock 99, it was in New York, it was three
days.
Speaker 2 (11:38):
They packed us in.
Speaker 1 (11:41):
They inflated every price.
People went ballistic.
People were starting fires.
So I'm standing there watchinglike I don't know the Red Hot
Chili Peppers.
They get pulled off stage.
I turn around, there's firesall around us.
Okay, people are blowing thingsup.
People were unwell and I waslike what are we going to do?
Unwell, people were wildlyunwell.
(12:03):
They had knocked over theport-a-johns.
They were sliding through theport-a-john water, which I'm not
sure everybody was thinkingthrough that yes.
Speaker 2 (12:11):
Yes On purpose?
Speaker 1 (12:12):
Yes, and so my friend and I were like this is it,
we're done.
And you know, I don't have acell phone, it's like 1999,
right.
And so we had to walk miles toget out of there.
We couldn't get back in.
All of our stuff was in a tentmiles away.
And so I did what any goodthinking like 19 year old would
(12:35):
do I ripped a piece of thewoodstock wall, we hopped in a
truck and we headed on home andso I show up.
I'm filthy dirty and my mom wasshowed up.
She saw us pull in early.
She opens the garage door,hands me a towel and was like
you're not coming in here,you're discussed and you're
going to like change down hereand you're going to be done.
It was the craziest experience,and so then the documentary
(12:58):
came out and I was watching it.
I was like mortified that I wasthere.
Speaker 2 (13:03):
I was like it looks even worse you know when you're
living it and then you rewatchit.
Speaker 3 (13:08):
Yes, I'm going to watch it now.
The.
Speaker 1 (13:10):
MTV poll, like where the guy sat.
They knocked it down.
People were so angry on howmuch everything cost and how
much people they like jammed inthat like everybody's energy was
off and it was bad.
Speaker 2 (13:25):
I know, know.
I mean I remember seeing alittle bit of that odd
documentary.
I wasn't there, but I do feellike it's a story to tell.
Speaker 1 (13:33):
You saw that shit like firsthand I got knocked
over in a mosh pit for throwingrage against the machine and I
found 20 bucks oh wait, say itagain.
Speaker 2 (13:42):
Yeah, so I got again.
Speaker 1 (13:42):
Yeah, so I got knocked over, so again mad
energy Got knocked over in amosh pit while we were there
during like a rage against themachine, sort of like moment
Boom hit the ground.
I was like, oh my gosh, here's20 bucks, and 20 bucks at
Woodstock was like that wasgetting you a water.
Speaker 3 (13:59):
That's it, but it was getting you a water.
Speaker 1 (14:09):
That's pretty good, like 25 years ago though but
yeah, some people die in moshpits.
But you found 20.
I found 20 bucks, that's good.
And we made it down to themcdonald's in rome, new york,
and got a water.
I called my mom from a payphone and I was like I called my
mom from a pay phone and I saidmom, it's not going well.
I was like I think you're onthe news.
She's like have fun.
I mean seriously, it was so bad.
Speaker 2 (14:31):
You guys are fucking hilarious.
The Cubans leave it to theCubans.
Have you ever accidentallyruined a relationship between
friends or family?
Speaker 1 (14:42):
Well, I mean to be fair, full circle, full circle.
That first story, like I nevertalked to like bestie, for the
rest he turned never again thankgod when I kicked her out of
the wed.
You know what I?
Speaker 2 (14:54):
mean, oh, you did, yeah, like when I kicked her day
over.
Speaker 1 (14:57):
No, not the day of maybe like a couple weeks before
.
Good for you may have had thedress and she may have had to
pay for it, but I mean, it iswhat it is.
You know what?
Speaker 2 (15:05):
I mean.
I mean, she does not deserve totreat her like bride friend to
be.
No.
Speaker 1 (15:10):
And she called me a bridezilla and I was like sis,
I'm not a bridezilla, you knowwhat I'm saying, I'm just tired
of dealing with your mouth.
Speaker 2 (15:16):
Yeah, skrrt.
I mean what, Honestly, you pickself-respect over putting up
with that bullshit?
Speaker 1 (15:23):
I was petrified for the day of because I didn't want
to listen to it, so I was justlike we're done.
Speaker 2 (15:29):
Good for you.
Cut the cord, be done, and youdon't have any animosity from
that.
Speaker 1 (15:33):
You know what?
No, I'm actually like you knowwhat Wasn't meant to be Toodaloo
.
You know what I mean.
Speaker 2 (15:45):
Toodaloo Deuces, yeah , peace.
I think we all need to educatesome people Like even like old
relationships or friends andfamily, just because you're
blood, like if they're notserving you At this stage of
your life, in our 30s, 40s, 50s,like get rid of them okay.
Speaker 3 (16:02):
So, missy, it was great to get to know you a
little bit.
That was fun yeah, um I thinkwhat we're all here for and like
.
More importantly, we want totalk about jacks, yeah let's
talk about jacks we're gonna getinto those questions for you.
Can you share more aboutjacks's journey from being a
healthy baby to being diagnosedwith ipAX?
(16:22):
What were some of the earlysigns that led to his diagnosis?
Speaker 1 (16:27):
Yeah.
So that's a journey.
That's a journey of a thousandmiles.
So Jax was born happy, healthy,checking all the boxes.
We were brand new parents, likeliving, like we thought we were
living our best sleepless lives, you know, and fast forward to
sleepless lives, you know andfast forward to it was
Thanksgiving and he was two anda half.
I had just had my son, lincoln.
(16:52):
So Jax is two and a half yearsolder than him.
Lincoln was a newborn and Ithought Jax was acting off but I
was like he had never been sickbefore.
So like, let's, let's, let'slive this out.
Maybe this is our first timeand I had, I remember so vividly
, calling the like the pediatricperson on call, because it's a
holiday, of course.
And they were like oh, you knowwhat, just like live it out, do
the vaporizer.
(17:12):
You know, keep them, keep themwell like, keep them like
comfortable.
And I thought, okay, but thisfeels weird, this feels
different.
And so next morning it's nowBlack Friday and we were going
to go get a Christmas tree and Iremember I said to my husband,
Pete, I was like something'swrong, like this isn't right.
So I put him in and we but itwas a skull blanket.
(17:32):
I love sugar skulls, like Ilove that.
Yeah, right, so he's wrapped inthis sugar skull blanket.
He had his little beanie on andthey saw us in the waiting room
and they came out to get us andthere's like tons of kids there
(17:53):
and they got us first.
And I thought that was weirdbecause we had just shown up and
they were like, hey, we, wewant to check your son's blood
sugar.
And I was like what do you mean?
And they were like yeah, wethink he might have type one
diabetes.
I was like no, he doesn't.
I was like we are unwell here,like this is not how this
adventure is going.
I think he has a virus.
Turns out, they put us in anambulance and sent us to
(18:14):
Children's Hospital.
I was there, he.
By the time we got there heended up in a coma because they
thought he had almost they hadto protect swelling of the brain
.
His body was giving out on himand so that was our first
adventure into finding outeventually that that was all
caused by ipex.
So he resulted in having type 1diabetes and we had this little
(18:38):
newborn at home.
We ended up spending like 14 or17 days in the hospital.
I'm like sleeping on achildren's hospital and they're
like floor pull out bed with anursing a newborn and taking
care of a two and a half yearold who, quite honestly, felt
like two newborns, because wealready had, you know, we had to
learn how to take care of Jaxnow, and then we had Lincoln,
(18:59):
and and then after that the balljust kept rolling in very bad
ways for him.
That resulted in so manyhospitalizations.
I watched him almost lose hislife so many times, a majority
(19:24):
of his time, one of the times hewas in a coma at the hospital
with him and those beeps, Ithink just really it's a lot for
people to manage, and so youknow, fast forward to all of
those things.
we had finally met some docs andthey were like hey, this
doesn't feel good.
And I said, right, everybody'sbeen telling me it's bad luck.
I was like this is way morethan bad luck.
Folks Like we need an answer,and that's how we ended up
(19:47):
finding out that he had IPEX.
But that was a long time to gobefore we got there.
Speaker 2 (19:52):
Do you have any blame for people not being able to
identify that sooner?
Speaker 1 (19:58):
I think that I don't have blame that they didn't find
it.
I have blame they didn't listento me.
Because all along I was likethis is more than bad luck, like
I have two kids now and oneresponds far differently than
the other, and I kept asking,like people that had kids with
type one diabetes, I was like,is this how they react when
(20:18):
they're sick?
And they're like no, no,they're sick and they're like no
, no.
And I will never forget amedical professional had said to
me you know, sometimes thiskind of thing happens type 1
diabetes, when a reallyemotional, traumatic event
occurs.
And I'm holding Lincoln as anewborn and I was like what are
you saying?
They're like, you know, likethe birth of a sibling, and I
(20:41):
was like, wow, you just put in anew mom's head that you're my
son, my older son is sickbecause I had a baby, and that
is just yeah, we.
That was my first venture inunderstanding that I need to be
a really big voice and a reallybig advocate in my family's life
(21:03):
.
Speaker 2 (21:03):
Absolutely.
Speaker 1 (21:09):
Yes, I mean, we've heard navigating the healthcare
system can be very challenging.
Yes, and, and you know,teaching hospitals are awesome
because it teaches folks how tobe great professionals, but also
you have to navigate that pieceyou know when you see your son
dying and they're like no, no,we're not, we're, we're, no,
we're moving on and we need toget some folks in here that are
skilled and you have to trustyour gut.
(21:31):
At the end of the day, I telleveryone, even the kids, anybody
that I come in contact withtrust your gut, because it's
probably right, and had I not, Ithink I would have lost Jax a
long time ago.
Speaker 3 (21:43):
I do think, like a mother always knows.
So could you go into a littlemore detail about IPEX and its
daily effects on Jax's life andsome of the symptoms and
challenges he faces?
Speaker 1 (21:58):
Yeah, so IPEX is a really rare autoimmune disorder.
It's life-threatening.
One in 1.6 million people haveit.
I have it actually, and so theneat thing about science is that
you know women have two exes,men only have one, and so his
shows the symptoms, my ex wrapsit up and is quiet, so I won't
ever be ill or unwell, and infact, had I not had boys, I
(22:21):
would have never known I hadIPEX.
Speaker 2 (22:23):
Right.
Speaker 1 (22:24):
Yeah, and in fact it's in most of the females in
my family is what we've foundout, so and Lincoln does not.
Lincoln does not have IPEX.
Yeah, so we had to get himtested to see one if he had IPEX
and two if he was a match,because the only known cure is a
blood stem cell transplant or abone marrow transplant, and so
(22:48):
we had to get him tested forthat.
And I always say I can'tcelebrate, he doesn't have it,
because I mean, how can youcelebrate it?
Speaker 2 (22:51):
It's just like check the box we don't have to deal
with.
That is really what that is.
Speaker 1 (22:54):
But yeah, ipex is funny because it creates all of
these autoimmune disorders.
So a little tiny virus isreally exacerbated for Jack.
So he's not under like peoplethink that he has no immune
system.
He has like Mach 10 race carimmune system.
He's like Formula One.
So once something comes in,it's like I'm obliterating that
(23:14):
and whatever it's in his way.
So it's going to be organs andtissues and things like that so
that's why he continues toacquire autoimmune disorders, so
little viruses can have reallylong lasting, big impacts.
Because he has myastheniagravis too, which affects the
eyes and the nose and thebreathing and the chewing and
all of the things, and usuallythat's in the elderly, not a
(23:38):
five year old, because he wasdiagnosed with that at five, so
it's just been a journey.
Speaker 2 (23:44):
And you still remain this high, optimistic, positive
mother, positive psychologist,if I may say, and just like you
really do really shed thisbright light that people want to
be around you and this issomething that you need to
educate everyone about, and thisis I mean, this is part of your
being.
I could feel it.
Speaker 1 (24:06):
Yeah, you know it's about the universe provides.
And so what you give out intothe universe, you're going to
get back.
That's what I really believe.
And so the you give out intothe universe, you're going to
get back.
That's what I really believe.
And so the more that I can beout there and I'm not going to
just be an advocate for Jax, I'mgoing to talk about the
disparities on the bone marrowor the stem cell registry.
I'm going to talk about thedisparities in the care that
(24:29):
we've received, because mylittle story can impact many,
many people.
We've saved so many lives inthe work that I've done so far.
You know we've registered over7,000 folks in Jax's honor.
I get countless calls that mycousin signed up for Jax, but he
got a call that he's a matchfor somebody else.
Tj was a match for somebody inFlorida.
(24:49):
He ended up not going the wholeway because they found somebody
else that was a closer match.
But again, lives are beingsaved.
And so you know what I'm goingto put out.
I'm going to get back what Iput out.
And so if I can put out graceand love and support and
advocacy for other families whoare experiencing the heartache I
have, then I'm going to getthat back twofold.
Speaker 3 (25:09):
Right.
So, to go into it a little more.
What does Jax need to undergofor the bone marrow transplant
and why is finding a matchspecifically challenging due to
his Latino background?
Speaker 1 (25:22):
Yeah.
So the registry as it standstoday is not incredibly diverse.
So if you are Caucasian 85, 90%chance you're going to get a
match.
Anybody else like Hispanic andLatino and that's 100% Hispanic
and Latino you have less than a50% chance.
Black Americans less than a 30%chance, and it's all because
(25:43):
there's not enough diversity onthe drive as it stands.
And so my goal is to one find amatch for Jax, but, two, give
folks a voice.
Every person should have amatch, right.
Every person should have asecond chance at life, and they
deserve that as humans.
And so I'm in thoseunderrepresented communities
(26:04):
educating them on why theyshould be on the match, because
there's a lot of medicaltrepidation for those
underrepresented communities,right, they have been treated
poorly in the past, and so it'sgetting them to understand
you're joining to help yourcommunity, you're raising up
your community, you're savingyour neighbors, you're saving
your family members, you'resaving other communities like
(26:27):
yours, right?
So get on the registry and saveyourselves, because it's all
about saving ourselves.
Speaker 3 (26:32):
Yeah, yeah, I mean you're talking about how like
important community is.
Are there any like upliftingstories for the community?
I know it's a small one rightnow, so many yeah.
Speaker 1 (26:45):
So our community is really, really big.
So we've held events all overthe country, including Puerto
Rico and Mexico.
But even just for my family,like the Pirates I talked about,
they give us a charity boxevery year.
They do so much for Jax.
They send him like Christmascards and gift cards and little
(27:05):
presents.
I mean, who are we?
You?
Speaker 2 (27:08):
know what I mean.
That's what I'm always like whoare we?
Speaker 1 (27:10):
Mark Reckie.
We met Mark Reckie at one ofour events and he was like you
know what I can do?
Sid the Kid, we're going to gethim a jersey.
So he sent Jax a jersey.
Jax's face, like it, showed up.
We got home from Californiabecause I entered Jax in a
clinical trial to help save him,because we haven't been able to
do anything else otherwise.
(27:31):
So this jersey shows up when wecome home from California.
He was just beaming becauseit's just us in essence, right,
but like all of these people dothese beautiful things, it's
just little drops in a hugebucket of hope and love.
I'm part of the Rotary Clubbecause, again, giving back is
(27:53):
really important to me.
I ask a lot of people to do alot of things for me and so
giving back is part of that.
But we took over a bar,actually in my town and all the
Rotary members were.
I was a bartender and we wereservers and all the proceeds
went back to Jax.
I mean, these people are comingup with these events to help
spread the word and get peopleon the registry and and
fundraise for us to be able togo to California and go to
(28:16):
Stanford.
Well, Lucille PackardChildren's Hospital will be part
of Stanford University trial,just to help do something.
And they're like, but it's justlittle.
I'm like it's not just little.
These are huge acts of kindness.
Speaker 2 (28:29):
Absolutely.
And what was the bar that youguys had?
Shoebrew, shoebrew, okay,shoebrew, okay, yeah, shoebrew
right in our town of Zillianople.
Speaker 1 (28:36):
We overtook it.
We were all the servers andbartenders and everything.
Speaker 3 (28:39):
I loved it.
Speaker 1 (28:39):
I was like oh, I can do this.
I loved sitting behind that bartalking to everybody hearing
their stories.
They were excited to see me youknow, serve them a little hot
pretzel and a cocktail.
Speaker 2 (28:51):
Definitely that energy is infectious.
Speaker 3 (28:56):
Yeah, it was fun.
Yeah, what would you like tosay to listeners who might be
inspired to join the Be A Matchregistry or support families
like yours?
Speaker 1 (29:04):
I would say never turn down the opportunity to be
a walking hero.
You know, I think that if youcan give the gift of life, why
not?
And it's such an easy concept.
It's the swab of a cheek, andwhen you hear bone marrow, it's
now really about blood stem celland that's just like a plasma
draw.
Speaker 2 (29:24):
That's just blood.
Speaker 3 (29:26):
They're just taking blood and taking the plasma from
it.
That's all it is.
Speaker 1 (29:29):
Yeah yeah, they're taking the stem cells from it,
so it goes through a centrifuge.
You know it's like over thecourse of a couple hours.
Be the Match is now an MDP.
They pay for everything.
They'll pay for your dog sitter, cat sitter.
They will pay for all your food, room and board, if you have to
go somewhere, if you have to doanything overnight.
No stone unturned to help savea life.
Speaker 2 (29:50):
Why not?
That's amazing.
Speaker 1 (29:55):
Yeah, it's an incredible thing and you know
you could get the call.
You may never get the call.
I know somebody that saved twolives personally, I mean that's
like that's the gift, right.
Speaker 2 (30:02):
That's it.
That's, that's the, and yourbrother was going to as well.
Yeah, Somebody he was.
Speaker 1 (30:07):
He was.
He went through the whole kitand caboodle because they do a
physical for you, they do someblood labs just to make sure
you're healthy enough to todonate, and then ended up it was
a female from florida and youknow it really comes down to a
lot of nuance and just this onelady had an edge on tj.
Speaker 2 (30:26):
But they said to him you know, we might call you back
if this doesn't work now let meask you this why were the two
matches for Jax not what areyour?
You don't really know why theyweren't able to follow through.
Speaker 1 (30:39):
I don't, I suspect.
So I suspect that they werejust became largely unavailable.
So, one of the events that wedid.
We were so fortunate to be ableto do the shell plant in Beaver
and that was a huge diverseopportunity.
There was people from all over,from Puerto Rico, from Mexico,
(31:01):
from the Dominican, fromGuatemala, and they were all
here working at the shell plant.
And the lawyers when I wastalking with them, they were
like we don't usually do this.
I'm like but come on, think ofall the lives you can save, they
let us in and the company.
Then they gave them all bonusesand it was a huge event.
(31:22):
We had over 700 people join andI think by the time their name
hit they probably were left theUnited States and we couldn't
find them.
Speaker 2 (31:29):
Okay, because we want to be pushing this message, we
want to get involved.
We want to be pushing thismessage, we want to get involved
.
We might not be a match, butwhy would we not be able to, you
know, get involved and testourselves?
For and you know being like anadvocate for you know, not only
Jax, but, like you said, there's.
So why not give an opportunityto save a life?
Speaker 1 (31:50):
And it's really so easy, and I think, even just
sharing the story.
So that's what I always say, ifnothing else.
If you know, people are alwayslike needles.
I'm afraid of needles, I'mafraid of this, I can't do this,
and I'm like listen, share hisstory, talk about it, because
he's not the only one that needsthis.
Right.
And so if it becomes just thiscommonplace thing where we all
(32:10):
were just like, oh yeah, we cando that, or oh yeah, I know
somebody who might be able tohelp in this way, you know six
degrees of what is it?
Six degrees of Kevin Bacon,somebody knows somebody.
Speaker 2 (32:20):
We're always going to be able to help somebody, you
know exactly.
Speaker 1 (32:24):
It's just about spreading love in the word.
Speaker 2 (32:26):
Now tell us what you are.
You go ahead, kelly.
Go ahead, tell us what yourmessy debauch, since it is in
line with, mocktails are messyit is what's your messy is
debaucherous, crazy drunkencollege story for us all right.
Speaker 1 (32:43):
Well, I talked about this one today too, because I
was like running it by a fewpeople.
You know what I mean.
I was like is this good?
So we before ubers were cabs.
Little known fact, right.
Speaker 3 (32:56):
And so I was of the cab era.
Speaker 1 (32:59):
And so I used to take cabs all over the place, and so
I took a cab with my frienddown to the South side, and then
we were heading back to Oaklandto just continue the day.
Speaker 2 (33:09):
Right, you were a pit girl.
Speaker 1 (33:11):
Yeah, pit is it H-T-P .
Oh shit, pit is it, pit is it.
Speaker 2 (33:15):
H-t-p.
Oh shit, yeah, yeah, pit is it,pit is it.
Let's fucking go yeah let's go,so anyway.
Speaker 1 (33:19):
So, heading back, and I felt like the cab driver was
taking a long way, a long wayaround, and I thought this is
weird, but again, there was alot at play.
So we end up circling aroundand he pulls into a driveway
that was not our finaldestination and he gets out and
(33:41):
locks the doors and we were likeno, no, no, no, no, no, no.
Yeah, so don't worry, it's agreat ending.
Speaker 2 (33:51):
So he leaves.
Speaker 1 (33:52):
And I say to my friend I was like like we got to
get out of here but the thedoors lock from the inside.
So I jumped up front, tookmatters into my own hands
because he had the keys pushedout the window with maybe a foot
jumped out, got her out and wesprung the joint.
Speaker 2 (34:08):
So we go.
Speaker 1 (34:09):
We ran to the next destination and they were like
what's going on?
Because of course we'd come in.
We're like main characterenergy.
You know I didn't enter justlike it was any old day, right?
So I tell them what happened.
The dude shows up.
So they ended up having to callthe police and it was a whole
thing.
It ended well.
Was he trying to kidnap you?
(34:31):
I don't know.
I mean, the next day I reallyhad to reflect on that and be
like, was I?
Speaker 3 (34:36):
being dramatic.
No, I would have done the samething.
Speaker 2 (34:38):
Oh, my God.
Speaker 3 (34:40):
Did you have like heels on?
You don't want to be taken outof the boot Because it was
winter.
Speaker 2 (34:44):
So you know what I mean Womp out of wind.
Oh my God, yeah.
Speaker 1 (34:50):
That is horrifying, yeah, but also I did, I have to
be honest.
The next day we sat on thecouch for a long time thinking
about that.
And I was like was that alittle like a little, a little
mishap, a little mix up incommunication?
Speaker 3 (35:06):
I don't know, but it ended well, makes you wonder
yeah, wow, that is reallysomething, that's a good story.
Speaker 2 (35:13):
That might be our best one I know, and I didn't
mean to cut you off.
Speaker 3 (35:17):
That's okay.
Yeah, how can people to wrap uphere, how can people stay
updated on Jax's journey andhelp spread awareness?
Speaker 1 (35:26):
Yeah, so if they want to join the registry, you can
get a kit sent to your home andall they have to do is text Jax
Ramirez, pa to 61474.
Find us at any old event.
I'll be at Pitt this Saturday.
Speaker 2 (35:39):
What's the number?
Speaker 1 (35:40):
61474.
So it's Jax Ramirez, pa to61474.
They can follow us on socialmedia.
I'm incredibly active.
Speaker 2 (35:50):
Yes, she is.
Speaker 1 (35:51):
She's good to follow oh thanks, yeah, so it's at Be
the match for jacks on instagramand facebook, and then jacks
needs a hero on tiktok, whereyou might see me, like you know,
showcasing a few fun items soeasy to remember at find the mat
or be the match for jacks bethe match for jacks, and that's
j-a-x j-a-x and then jacks j-a-xhero.
Speaker 2 (36:12):
Nice.
Speaker 3 (36:14):
Missy, you are such a bright light.
Thank you for being here.
We want to be here for you.
You're very special.
You're a very special person.
We can tell right.
Speaker 2 (36:23):
Of course, not just the main character.
You're definitely meant to bein this position and help others
, including your son.
And we want to give back asmuch as you do, so thank you for
inspiring us.
Speaker 1 (36:37):
Yeah, thank you.
Thanks for letting me be here.
This was like a bucket listitem, so check it.
Oh my God.
Speaker 2 (36:42):
I want to get you started, you and maybe your
buddy.
Speaker 1 (36:45):
Let's do it.
I think we might have a journeyin this place.
Speaker 2 (36:48):
I know we might have some production assistants
involved Cheers yes, honey, youknow some production assistants
involved, Cheers yes honey.
Speaker 1 (36:55):
Thanks for watching Mocktails.
Or Messy with Missy.
From Missy.
Yeah, missy Woo, let's go Allthe M's right.
It was a tongue twister.
Speaker 2 (37:04):
Oh, for sure.
Yeah, it is For sure.
Thank you guys for watching.
We're so happy to have Missy inthe studio.
This is Ryan Frankofsky andKelly Musgorski.
Cheers, cheers, cheers.
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