June 2, 2026 • 25 mins
At just 13 years old, Liam faced a rare disease, chemotherapy, hospital stays, mental health struggles, and challenges most adults never experience.
But through it all, he kept going.
In this powerful episode of The Resilience Files: Unlocked, Liam shares his journey through illness, resilience, family support, hope, and learning how to find strength even on the hardest days.
✨ "Life's gonna throw curveballs at you."
✨ "It does get easier, but you have to do it every day."
✨ "I promise you there are going to be people that will miss you."
This is one of the most honest and inspiring conversations of the season.
🎙️ Now streaming on Spotify, Apple Podcasts, YouTube, and wherever you listen to podcasts.
#TheResilienceFiles #LiamHall #RareDiseaseAwareness #MentalHealthAwareness #Resilience #Hope #YouthVoices #Podcast #Healing #Inspiration
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:01):
When you feel like life hasdealt you a hand of unfair
cards.
Instead of voting, you doubledown and you stuck in the game.
You face battles.
You felt broken.
But hey, do us a favor.
Put your hand on your heart.
You feel that?
You're still here.
Welcome to the Resilience FilesUnlocked, where survival meets
(00:25):
transformation.
Welcome to the Resilient SpilesPodcast.
I'm your host, Carrie Bernins,and I am so excited about
today's guest.
Liam is 13 years old.
He has a phenomenal story.
Here at the Resilient Spales, weare not therapists.
We cannot diagnose you.
(00:45):
We are here to inspire you andshare real stories to help get
you out of the funk, get you outof the darkness sometimes.
Sometimes people need to hearother people's stories that have
been through what you're goingthrough or what you might be in
the middle of.
Without further ado, this essayis from Liam himself, and Liam
(01:07):
wants to read the essay on thisepisode.
Thank you, Liam.
Feel free to take it away.
Hello, my name is Liam Hall, andthis is my story about, and this
is gonna be a mouthful here,Hannock, Shawn Lin Kripura, or
HSP.
A little bit on a side note,just to grasp a little bit about
the my mental state further on.
I was diagnosed with a lightcase of autism when I was two
(01:28):
years old, but I didn't get HSPuntil I was nine.
Turns out that the flu I had afew days before the start of my
fourth grade year causedsomething that would be the most
traumatic and painful threeyears of my life.
It started as a few red dots onmy legs.
Nothing bad you would think,right?
A few days later, I couldn'tstand without crying from pure
(01:50):
pain.
When I arrived to the ER for thefirst time out of many, the
doctors and nurses didn't knowwhat was wrong with me, so I was
left with an IV in my wrist andthinking I was gonna turn to
patient zero.
I was sent home as they couldn'tdo anything to help me, and it
got worse.
As for the entire month of thatyear's September, my stomach
(02:11):
felt like it was being stompedon by an elephant.
I would vomit twice a day, onceif I was lucky, and refused to
eat more than a cracker,thinking it would make it worse.
Finally, I was taken to thechildren's hospital for a skin
biopsy so that my doctors wouldknow what to do next.
It led to high doses of steroidsthrough an infusion.
That didn't work, so they put meon rituximab infusions.
(02:33):
That didn't work either, so theyput me on chemotherapy.
All of that caused myimmunoglobulins to drop so low
that they needed to put me onimmunotherapy as well.
They essentially had to kill myimmune system for a reason I
can't really remember.
But I know that I had to behomebound, a fancy way of saying
homeschooled, for two years.
I even had to take versed, whichis a type of sedative or
(02:56):
something like that.
Basically loopy juice.
During infusions, due to theamount of grief they caused me
as they got harder and harder todo on the first try.
I was also put on a few pills,such as Celsept, and the main
cause of my trauma, steroids.
No, not the ones that make youbuff, ones that make you look
like the Stape Puff marshmallowman.
But more on that later.
(03:16):
As I'm going to talk about thegreat, the magnificent Dr.
Weiser.
He was incredible, crackingjokes whenever he could and
making me feel better when Ineeded it.
Unfortunately, he had to leavedue to something about going
back to his hometown.
That memory's fuzzy, so I'm notquite sure.
I am sure that he was replaced,seems like a derogatory term,
(03:39):
but I can't think of anythingbetter.
Replaced by Dr.
Cron, who isn't as great as him,but is still pretty good.
Not to mention that he's hadpatients who have had HSP
before, so he knows what he'sdoing.
He was the one who prescribed mewith steroids.
This worked at first.
No symptoms.
I almost felt normal.
Until the long-term use sideeffects kicked in.
(04:00):
Depression, anxiety, angerissues, cataracts.
It was bad.
It got so bad that I wanted tostop existing.
I'm not comfortable saying theactual term, but I hope you get
it.
Eventually, a solution showeditself.
Finally.
I went to my mom to theChildren's of Philadelphia to
see the head of the rheumatologydepartment, Dr.
(04:20):
Barns.
Burns?
Yeah.
B-E-H-E-A or B-E-H-E-R-N-S.
Do with that what you will.
Yes.
Barns.
He said that I should slowlytaper off of my medication.
If all goes well, yeepee.
If not, I would go back to theleast amount of said treatment
that would work until Ieventually wouldn't have to take
(04:42):
anything.
I am now 13, as stated earlier,attending my second year of
being in school on campus.
My mental health has improveddramatically.
I am on no medication.
I have zero symptoms, and I'velearned a valuable lesson.
Life's gonna throw curveballs atyou, and some of them are gonna
hit you smack dab in the face.
The best thing you can do isjust dust yourself and throw it
(05:03):
right back at them.
What I'm saying is, life suckssometimes.
I have no better way to saythat, but that doesn't mean you
have to let it completely ruinit for you.
You'll go through ups and downs,that's the point of life, the
way I see it.
You can't have actual happinessif you haven't had a moment of
sadness to make it worthwhile.
(05:25):
Wow.
Liam, you sure you're 13?
I am sure I am 13.
I actually um was taught how tospeak.
I didn't pick it up from myparents, so I do have a pretty
good sense of vocabulary.
No, you do.
I love that.
Liam, thank you so much forsharing that, and thank you for
(05:45):
trusting us with something sovulnerable and your sense of
humor and your intellect andjust how you described your
experiences is so so beautiful.
And I just want to just check inwith you right now and to ask
you, how are you doing today?
I am doing perfectly fine.
I had a uh I was about to saycivics geography quiz today.
(06:08):
Pretty sure I flunked it.
Doesn't matter, I'll be fine.
Oh yeah, why do you think youflunked it?
It was countries and I didn'tknow a single one.
Except for like two.
Oh yeah.
Are you studying and are youdoing your homework?
Yes, I am, actually.
Yeah.
Well good.
Well, you know uh just you canalways ask your teacher for
(06:29):
extra credit or to retest, youknow, and figure out what you
need to to work on and you gotthis.
Me personally, I'm not gonna askfor a retest or request ever
like that in my life, in myopinion.
It's just like okay, that'sdone, that's done.
Like, done better, could havestudied harder, whatever.
(06:50):
You'll get him next time, champ.
Okay.
Okay, I feel your mindset.
I feel it, I feel it, Iunderstand.
What do you remember the firsttime you got what what do you
remember but the first time yougot sick?
Do you remember that?
I know you were really young.
First time I got sick, a few keymoments.
I remember that the spots on mylegs, which are literally called
(07:10):
papira.
I forgot to mention this in theepisode, but I'm pretty sure
it's just inflamed or burstedblood vessels in my legs.
Yeah.
But I remember thinking thatbugs hated me for some reason
that particular year.
And you were thinking there werebug bites?
I remember heading to lunch oneday.
We were lined up as a class, Ifelt like perfectly fine
(07:34):
beforehand, but then like as wewere lining up, I had this huge
wave of nausea, and then justbreakfast out the window, or out
the mouth window.
Yeah.
Mouth window, I like that.
Well, I understand you wereexperiencing all of these things
(07:55):
during that time, and at first,like you said, you thought it
was just bug bites, or youthought maybe nausea, or you
weren't really sure, and thenyou went to the doctor and you
got this diagnosis, and then youwere in and out the hospitals.
How did it feel being in and outthe hospitals at that age?
Well, the diagnosis didn't comeuntil like a while after I'd had
(08:15):
it.
Like for the longest time, wedidn't know what was happening.
I was stuck thinking that I wasgonna recreate.
Which one has patient zero init?
The Last of Us Walking Dead, oneof those?
Yeah.
One of those popular zombiefranchises.
Yes.
So during that process ofbetween trying to figure out
what's wrong and getting thediagnosis, what was what was
(08:35):
going through your mind?
Being in and out of thehospital, you mean?
Yes.
Um it sucked, especiallyconsidering that I believe this
was either the high doses ofsteroids via infusion or the
Rituximab, one of those two, butI had to stay there for like an
entire day.
I had to spend the night there.
They had good food though,surprisingly.
(08:56):
Yeah.
How did it feel spending a nightin hospital?
Like as a child being.
Oh, I'm sorry.
Go ahead.
As a child, I would say also Iforgot to mention some things in
the essay that I'm just kind oflike remembering right now, and
I'm just like, should have saidthat.
Well, go ahead.
What is it?
But I was at one point at riskof pneumonia.
(09:17):
I didn't know what that meant,so I didn't realize what was
happening.
And then after I wasn't at riskof pneumonia, I just looked it
up and I was like, same thingwith kidney failure.
I was like too young to realizethat I literally could have died
because kidney failure, you needthose.
Yeah.
Absolutely.
Do you think that your naivenessto not knowing is what saved you
(09:38):
and kept you in high spiritsduring that time?
Yes, definitely.
Since I feel like if I knew thatI was at risk of straight up
meeting the big man upstairs, Iwould have like spiraled much,
much quicker.
And then the steroids would havekind of been the nail in the
coffin.
Right.
Yeah.
Oh.
(09:59):
You describe a lot of intensepain and not knowing what was
happening.
And what was the scariest partfor you at that moment?
Scaryest part for me at thatmoment was not knowing what was
gonna happen to me, just likewanting it to be over.
Since I remember one time Dr.
Kron told me, like, I went thereat one point, a couple of Junes
ago.
It happened on a June, likeliterally one of the best months
(10:21):
for a child since it is peaktime, summertime.
Okay.
Like, even as a child who hasn'tbeen to school physically in
almost a year.
Still just great month, right?
But I was like, okay, so when amI gonna be normal again?
Like a month, two months, I'mokay with like a couple more
months.
And then he was like, I hate tobreak it to you, but either
(10:43):
until you're an adult or for therest of your life.
He didn't say it that bluntly.
He tried being as gentle as hecould.
And I believe he actually saidit was two years, but I do
remember hearing at some pointthat I was gonna have it until I
was either an adult or just forthe rest of my life.
I have a very rare case of it.
Normally in children, it's onlyfor like a month.
Wow.
During that time, what did youfeel like the infusions and
(11:05):
treatments that you were given,how did they affect you
physically as well as likeemotionally?
Physically, you know, can aneedle plastic tube jammed it to
your wrist every two weeks?
I am not exaggerating in theslightest.
It was twice a month.
It eventually got dragged downto once a month, but still
pretty frequent.
But eventually, I used to belike deathly afraid of needles,
(11:26):
much like my sister, who willnot be in the same room as you
if you even mention them once.
And now, this is kind ofoff-drop topic, but I'm
perfectly fine with them.
I remember one time I was goingto summer camp and I needed to
get like actually no.
I was heading back to school,like middle school, first year,
but I had to get like a tetanusshot, and I was just like, go
ahead, sign the dotted line,sir.
(11:47):
Wow, and gotten used to it.
That's a plus, I guess.
I'm no longer gonna have a spazattack whenever I'm around a
needle.
Yeah.
Wow.
You talk about steroidsaffecting your mood and mental
health.
When did you realize that it wasstarting to change you?
When it started like ending acouple of friendships, due to
(12:10):
just like huge like outbursts.
And then I was just like, hmm.
So before I was on steroids,this didn't happen.
And I noticed they also gave mecataracts, so there might be
other side of it, like, oh yeah.
Yeah.
Well, I'm happy that you wereable to recognize that.
Did you tell your parents or youtold the doctors during that
(12:32):
time?
How did you advocate foryourself?
I'm actually pretty sure becauseback then it was still like a
theory in my end.
I wasn't too sure.
Yeah.
That's like what I believed.
And, you know, but then I alsothought that I was like being an
early bloomer or something.
I don't know.
A lot of like overthinking.
And then I was just toldstraight up, yeah, it's the
steroids.
(12:53):
Oh wow.
What do you think helped yousurvive that season where
friendships were kind of failingand your moods were changing,
and then you had realized whatthe steroids were doing.
I feel like it was just myfamily being there for me all
the time.
I mean, me and my mom had somelike heavy arguments, and I had
that stuff that like to this daywould never dream of saying to
(13:16):
anybody ever.
It was bad.
No.
But both of us have exchangedour apologies to each other
multiple times.
But it was just them like beingthere with me for it, not just
leaving me, since you knowthat's what family's for.
They're supposed to help you outwhen you're, you know, turning
into a red dot man.
Yeah.
I'm sorry that you experiencedthat.
(13:36):
And I appreciate you beinghonest about saying things to
your mom that you regret andthat you all have been able to
reconcile that because I do knowthat during this sensitive time
in your life, sometimes things,you know, your body and your
emotions and everything is atall high.
And sometimes things do come outcompletely wrong.
(13:58):
And I acknowledge you, you'reonly 13, and to realize that
earlier in life is great.
I you talked about Dr.
Weiser a lot, right?
Yeah.
And how he was there and he wasadvocating for you, and he just
seemed to be a really greatdoctor.
What are the things that he didthat you think other doctors can
do when a child is in asituation like you?
(14:20):
He was able, like somehow, I'mpretty sure dude was a wizard or
something.
But I'm pretty sure he was justwhat what do I mean?
I'm pretty sure.
I know this.
Come on.
Sorry.
But he was just able to make melaugh and feel better and
overall just have like a bettermental state.
I remember he called my friendHong.
(14:40):
He's Asian.
But he called my friend Hong theHonger.
Like he gave me two um littledum-dums, whatever they're
called.
I don't know.
And he was like, oh, what's thesecond one for?
He's like, for the honger.
Just unironically with thestraightest face ever.
That's one of my favoritemoments of him.
Yeah.
You love that, his sense ofhumor and how he kept you
(15:02):
laughing and your spiritslifting, huh?
Mm-hmm.
That's beautiful.
You mentioned when you went tothe children's hospital in
Philadelphia that that's whenlike things started to change.
What was that change?
Um Do you remember that time?
Vaguely.
I do remember, you know, as Isaid in the essay, uh, Dr.
Burns mentioning like apotential solution.
(15:23):
Like I was still on thosemedications, and we just kind of
assumed that if I was off ofthem, bad stuff would come back.
And then he was just like, well,let's see if it's true.
And then if it's false, thenkids gonna be fine.
Right.
So then he mentioned that youshould taper off slowly, right?
Yes.
(15:43):
And how did that tapering offslowly affect you?
Do you remember that?
It went pretty good.
I had like a few symptomoutbursts, so we like went back
to the least amount that I couldhave without an outburst.
Like tried the tapering offagain in like a week, and then
hey Presto, no more medicine.
Amazing.
How do you see your life now?
(16:04):
Do you have to continue to takemedicine now, or you I do have
to take Lucinapril forlong-lasting candy damage, but
at that point it's like almostcompletely fixed.
That's wonderful.
That's so great.
Overall, I see my life now.
It's a lot, and I'm here forevery last moment of it since I
know that if I actuallycommitted to some of the things
(16:26):
that I said I would do tomyself, then I wouldn't be able
to have these like greatexperiences.
I wouldn't have been able to doall this wouldn't have been able
to go to middle school.
Yeah, let's talk about that alittle bit.
So you mentioned, I know youdon't want to say the word, and
we don't have to say the wordhere on this podcast, but I'm
okay with saying it if it'llhelp people later get the idea.
(16:50):
Yeah, you mentioned that youwere suicidal and as a young kid
and you're you're just only 13now, but this happened before
13.
What was going through yourmind?
What made you feel that way?
Well, the first time it happenedwas when I was told that I was
gonna be stuck with this for avery, very long time.
And like go ahead, I'm sorry.
(17:18):
One of them was because Iverbally declared that I would
kill myself.
And the other one was because ofa random incident that I just
straight up refused to saywasn't anything suicide related,
but just no just gonna let youuse your imagination there.
(17:39):
Yeah.
When when you were going throughthese feelings, was it because
you were you say you didn't wantto live with this?
Do you not think that a life ofliving with with illness could
be a good life?
I mean, at the moment I justthought that I would like
constantly have these issues,and at that point I was just
(18:01):
like, if that's gonna be mylife, then I don't want it.
Then like I don't want there tobe that life to have.
Were you able to talk to anybodyduring that time?
Able to talk to people, I wasable to get the help I needed,
and I am forever grateful.
During that moment, who did youtrust in telling this to?
(18:23):
Or did you write a letter, ordid you just decide like like
who was the person that pulledthe the alarm and said, no,
we're gonna get Liam help rightnow?
My mom definitely, because um mydad wasn't um, by the way, I
declared that whole first time Iwent to the mental award
(18:43):
children's hospital when Ideclared suicide.
Dad wasn't there.
Pretty sure he had to go do somework related, and that's
perfectly fine by me, honestly,since I feel like it would have
been ten times more like I justI'm just glad that he didn't
have to hear like his child likeat I'm pretty sure I was 10 or
(19:05):
11, just like without a singlehesitation say that he was gonna
kill himself.
My mom was there.
She's always been like a littlebit of like anxiety, and this
definitely dragged it throughthe roof.
So both me and her were kind ofgoing through it.
Yeah.
So her hearing that was justlike, no, he is going to the
mental world right now.
I am not letting my child killhimself.
(19:27):
I'm not even letting him thinkabout it.
We're fixing this.
Absolutely.
I love that your mom advocatedfor you like that.
And Liam, there's some kids outhere that's gonna be listening
to this episode, and there'salso gonna be some parents
listening to this episode andteachers and doctors.
First, let's just speak to thekid.
(19:48):
What would you say to littleyoung Liam that's 10 years old?
What would you say to Johnny orX or whoever may be going
through this right now?
What would you tell them?
So no matter what you're goingthrough, may it be a lost
parent, a disease like mine,just anything traumatic that has
caused you to question whetheror not staying on this planet is
(20:09):
really worth it.
It is, since I promise you thereare going to be people that will
miss you.
And I can just list a few, likethere are going to be relatives,
grandparents, parents, yourfriends, folks like that.
So if you're really gonna thinkabout doing that, the way I kind
(20:31):
of stop myself was kind of stopand think, wait, how would this
impact them?
Because if I commit suicide,then how is that gonna impact my
mom, my dad, my sisters, mybrother, my friends, my grandma,
sweet, sweet grandma.
Yeah, your grandma, yeah, sheloves you so much.
For parents, I would say, if youhave a child that is going
(20:54):
through something problematic,do not, even for a second, turn
their back on them.
I'm not saying I had my backturned.
I'm just saying, fleeze for thelove of everything that is holy,
be there with them, comfortthem, help them get through it.
For doctors, if you are thiskind-there's like two types of
doctors in my mind, there'sphysical and there's mental.
(21:14):
We'll just start like actualdoctors that do like, you know,
doctory stuff.
If you are about to like breaknews to somebody, and like Dr.
Khan did an incredible job atthis, it was just I was already
like steroid crazy, so I feellike no matter what he would
have said, I would have had thesame reaction, unless he just
didn't tell me.
Which just is dishonest.
(21:34):
I'm not saying don't tell, like,let's say, for example, and this
is a very dark example, but Ican't think of anything else at
the moment, you are about totell a child that they have a
terminal case of cancer, oryou're about to tell the parent
that their child has that.
Be as like gentle as you can.
Because I am telling you rightnow, like, for a hundred percent
(21:55):
fact, no matter what you say orhow you say it, they are going
to take that next.
Negatively, but if you are likeblunt about it, then they are
going to take it ten timesworse.
Once again, Dr.
Kron did an incredible job atdoing this.
Yeah.
And then I also had a therapist.
I do not remember her name, butshe was a very sweet lady.
Um, you know, just keep doingwhat you're doing.
(22:18):
You're a therapist for a reason.
That's all I gotta say.
I love that.
One thing that you said at theend of your essay.
You said, Life sucks sometimes.
You were really blunt and frankwith us.
But if you keep going, said itdoesn't mean you have to let it
control you.
What does that mean to you?
(22:43):
It's an adult swarm or somethinglike that.
It does get easier.
Believe every day it getseasier.
But you gotta do it every day.
That's the hard part.
But it does get easier.
I just heard that and I waslike, wow, wow.
All right, sweet.
I'm gonna keep that in my mindnow.
It does.
I love that.
It does get easier.
You're gonna put one foot infront of the next and that in
(23:05):
front of the next.
And they always say the light isat the end of the tunnel, but if
you sit in the middle of thetunnel, it's hard to see the
light.
But if you somehow keep going,even a little momentum is still
momentum, you will eventuallysee the light.
Wow.
You know, this is so beautifulbecause not only did you
survive, you are thriving andyou are giving back in
(23:27):
meaningful ways, the way thatyou're sharing your story right
now.
Because I know that there's manyyoung children, adults too,
people that are suffering fromillnesses and just like
depression, and they're sad andthey're considering the thought
of suicide.
And I just want to say thank youso much for being so vulnerable
with us.
Thank you so much for being you.
(23:50):
Thank you for your sense ofhumor.
Thank you for caring.
Thank you for pushing throughthe pain.
And I'm so thankful that yourparents also advocated and kept
asking the doctors and keptpursuing answers for you.
I don't want to leave thisepisode without asking you.
(24:10):
Do you have anything else thatyou feel that you want to say?
Well, I feel like I would liketo give my thanks to you, the
resilience files, and youspecifically for giving me this
opportunity to go out and tellpeople how I survived this and
how they can go throughsomething like that too.
Actually, fun little plan thatI'm doing, like life goal, a
(24:31):
fundraiser, like a littlewebsite fundraiser stuff, that
is going to be entirelydedicated to research and just
figuring out more like rarediseases that many people don't
know of, since that's basicallywhat I went through, not knowing
what happened to me for a prettylong while.
Three months, it's still prettylong considering the fact that
(24:52):
you're like just turned 10.
Yeah.
It is, I love that.
Wow, Liam, look at you.
You've thrived and you'repushing through, and you're 13,
and you have so much living infront of you.
So I want to say thank you somuch again for sharing your
story.
And this has been the ResilientSpouse Podcast.
I hope that you enjoyed theepisode today with Liam.
(25:13):
Liam is just 13 years old.
And if Liam can push through,you can push through too.
Remember, there is light at theend of the tunnel.
You just have to keep going.
Ending your life is not theanswer.
There are gonna be so manypeople that miss you, and you
have so much purpose here onthis earth.
I'm Carrie Bernanz.
If this episode inspired you,please share it with someone.
(25:36):
If you know a young person,elementary, middle school, high
school, whoever they are, orjust someone going through a
hard time, share this episodewith them.
Let them be inspired and tune infor the next episode.
Thank you so much for joining ustoday.
When you feel like life hasdealt you a hand of unfair
cards.
Instead of voting, you doubledown and you stuck in the game.
You face battles.
You felt broken.
But hey, do us a favor.
Put your hand on your heart.
You feel that?
You're still here.
Welcome to the Resilience FilesUnlocked, where survival meets
(00:25):
transformation.
Welcome to the Resilient SpilesPodcast.
I'm your host, Carrie Bernins,and I am so excited about
today's guest.
Liam is 13 years old.
He has a phenomenal story.
Here at the Resilient Spales, weare not therapists.
We cannot diagnose you.
(00:45):
We are here to inspire you andshare real stories to help get
you out of the funk, get you outof the darkness sometimes.
Sometimes people need to hearother people's stories that have
been through what you're goingthrough or what you might be in
the middle of.
Without further ado, this essayis from Liam himself, and Liam
(01:07):
wants to read the essay on thisepisode.
Thank you, Liam.
Feel free to take it away.
Hello, my name is Liam Hall, andthis is my story about, and this
is gonna be a mouthful here,Hannock, Shawn Lin Kripura, or
HSP.
A little bit on a side note,just to grasp a little bit about
the my mental state further on.
I was diagnosed with a lightcase of autism when I was two
(01:28):
years old, but I didn't get HSPuntil I was nine.
Turns out that the flu I had afew days before the start of my
fourth grade year causedsomething that would be the most
traumatic and painful threeyears of my life.
It started as a few red dots onmy legs.
Nothing bad you would think,right?
A few days later, I couldn'tstand without crying from pure
(01:50):
pain.
When I arrived to the ER for thefirst time out of many, the
doctors and nurses didn't knowwhat was wrong with me, so I was
left with an IV in my wrist andthinking I was gonna turn to
patient zero.
I was sent home as they couldn'tdo anything to help me, and it
got worse.
As for the entire month of thatyear's September, my stomach
(02:11):
felt like it was being stompedon by an elephant.
I would vomit twice a day, onceif I was lucky, and refused to
eat more than a cracker,thinking it would make it worse.
Finally, I was taken to thechildren's hospital for a skin
biopsy so that my doctors wouldknow what to do next.
It led to high doses of steroidsthrough an infusion.
That didn't work, so they put meon rituximab infusions.
(02:33):
That didn't work either, so theyput me on chemotherapy.
All of that caused myimmunoglobulins to drop so low
that they needed to put me onimmunotherapy as well.
They essentially had to kill myimmune system for a reason I
can't really remember.
But I know that I had to behomebound, a fancy way of saying
homeschooled, for two years.
I even had to take versed, whichis a type of sedative or
(02:56):
something like that.
Basically loopy juice.
During infusions, due to theamount of grief they caused me
as they got harder and harder todo on the first try.
I was also put on a few pills,such as Celsept, and the main
cause of my trauma, steroids.
No, not the ones that make youbuff, ones that make you look
like the Stape Puff marshmallowman.
But more on that later.
(03:16):
As I'm going to talk about thegreat, the magnificent Dr.
Weiser.
He was incredible, crackingjokes whenever he could and
making me feel better when Ineeded it.
Unfortunately, he had to leavedue to something about going
back to his hometown.
That memory's fuzzy, so I'm notquite sure.
I am sure that he was replaced,seems like a derogatory term,
(03:39):
but I can't think of anythingbetter.
Replaced by Dr.
Cron, who isn't as great as him,but is still pretty good.
Not to mention that he's hadpatients who have had HSP
before, so he knows what he'sdoing.
He was the one who prescribed mewith steroids.
This worked at first.
No symptoms.
I almost felt normal.
Until the long-term use sideeffects kicked in.
(04:00):
Depression, anxiety, angerissues, cataracts.
It was bad.
It got so bad that I wanted tostop existing.
I'm not comfortable saying theactual term, but I hope you get
it.
Eventually, a solution showeditself.
Finally.
I went to my mom to theChildren's of Philadelphia to
see the head of the rheumatologydepartment, Dr.
(04:20):
Barns.
Burns?
Yeah.
B-E-H-E-A or B-E-H-E-R-N-S.
Do with that what you will.
Yes.
Barns.
He said that I should slowlytaper off of my medication.
If all goes well, yeepee.
If not, I would go back to theleast amount of said treatment
that would work until Ieventually wouldn't have to take
(04:42):
anything.
I am now 13, as stated earlier,attending my second year of
being in school on campus.
My mental health has improveddramatically.
I am on no medication.
I have zero symptoms, and I'velearned a valuable lesson.
Life's gonna throw curveballs atyou, and some of them are gonna
hit you smack dab in the face.
The best thing you can do isjust dust yourself and throw it
(05:03):
right back at them.
What I'm saying is, life suckssometimes.
I have no better way to saythat, but that doesn't mean you
have to let it completely ruinit for you.
You'll go through ups and downs,that's the point of life, the
way I see it.
You can't have actual happinessif you haven't had a moment of
sadness to make it worthwhile.
(05:25):
Wow.
Liam, you sure you're 13?
I am sure I am 13.
I actually um was taught how tospeak.
I didn't pick it up from myparents, so I do have a pretty
good sense of vocabulary.
No, you do.
I love that.
Liam, thank you so much forsharing that, and thank you for
(05:45):
trusting us with something sovulnerable and your sense of
humor and your intellect andjust how you described your
experiences is so so beautiful.
And I just want to just check inwith you right now and to ask
you, how are you doing today?
I am doing perfectly fine.
I had a uh I was about to saycivics geography quiz today.
(06:08):
Pretty sure I flunked it.
Doesn't matter, I'll be fine.
Oh yeah, why do you think youflunked it?
It was countries and I didn'tknow a single one.
Except for like two.
Oh yeah.
Are you studying and are youdoing your homework?
Yes, I am, actually.
Yeah.
Well good.
Well, you know uh just you canalways ask your teacher for
(06:29):
extra credit or to retest, youknow, and figure out what you
need to to work on and you gotthis.
Me personally, I'm not gonna askfor a retest or request ever
like that in my life, in myopinion.
It's just like okay, that'sdone, that's done.
Like, done better, could havestudied harder, whatever.
(06:50):
You'll get him next time, champ.
Okay.
Okay, I feel your mindset.
I feel it, I feel it, Iunderstand.
What do you remember the firsttime you got what what do you
remember but the first time yougot sick?
Do you remember that?
I know you were really young.
First time I got sick, a few keymoments.
I remember that the spots on mylegs, which are literally called
(07:10):
papira.
I forgot to mention this in theepisode, but I'm pretty sure
it's just inflamed or burstedblood vessels in my legs.
Yeah.
But I remember thinking thatbugs hated me for some reason
that particular year.
And you were thinking there werebug bites?
I remember heading to lunch oneday.
We were lined up as a class, Ifelt like perfectly fine
(07:34):
beforehand, but then like as wewere lining up, I had this huge
wave of nausea, and then justbreakfast out the window, or out
the mouth window.
Yeah.
Mouth window, I like that.
Well, I understand you wereexperiencing all of these things
(07:55):
during that time, and at first,like you said, you thought it
was just bug bites, or youthought maybe nausea, or you
weren't really sure, and thenyou went to the doctor and you
got this diagnosis, and then youwere in and out the hospitals.
How did it feel being in and outthe hospitals at that age?
Well, the diagnosis didn't comeuntil like a while after I'd had
(08:15):
it.
Like for the longest time, wedidn't know what was happening.
I was stuck thinking that I wasgonna recreate.
Which one has patient zero init?
The Last of Us Walking Dead, oneof those?
Yeah.
One of those popular zombiefranchises.
Yes.
So during that process ofbetween trying to figure out
what's wrong and getting thediagnosis, what was what was
(08:35):
going through your mind?
Being in and out of thehospital, you mean?
Yes.
Um it sucked, especiallyconsidering that I believe this
was either the high doses ofsteroids via infusion or the
Rituximab, one of those two, butI had to stay there for like an
entire day.
I had to spend the night there.
They had good food though,surprisingly.
(08:56):
Yeah.
How did it feel spending a nightin hospital?
Like as a child being.
Oh, I'm sorry.
Go ahead.
As a child, I would say also Iforgot to mention some things in
the essay that I'm just kind oflike remembering right now, and
I'm just like, should have saidthat.
Well, go ahead.
What is it?
But I was at one point at riskof pneumonia.
(09:17):
I didn't know what that meant,so I didn't realize what was
happening.
And then after I wasn't at riskof pneumonia, I just looked it
up and I was like, same thingwith kidney failure.
I was like too young to realizethat I literally could have died
because kidney failure, you needthose.
Yeah.
Absolutely.
Do you think that your naivenessto not knowing is what saved you
(09:38):
and kept you in high spiritsduring that time?
Yes, definitely.
Since I feel like if I knew thatI was at risk of straight up
meeting the big man upstairs, Iwould have like spiraled much,
much quicker.
And then the steroids would havekind of been the nail in the
coffin.
Right.
Yeah.
Oh.
(09:59):
You describe a lot of intensepain and not knowing what was
happening.
And what was the scariest partfor you at that moment?
Scaryest part for me at thatmoment was not knowing what was
gonna happen to me, just likewanting it to be over.
Since I remember one time Dr.
Kron told me, like, I went thereat one point, a couple of Junes
ago.
It happened on a June, likeliterally one of the best months
(10:21):
for a child since it is peaktime, summertime.
Okay.
Like, even as a child who hasn'tbeen to school physically in
almost a year.
Still just great month, right?
But I was like, okay, so when amI gonna be normal again?
Like a month, two months, I'mokay with like a couple more
months.
And then he was like, I hate tobreak it to you, but either
(10:43):
until you're an adult or for therest of your life.
He didn't say it that bluntly.
He tried being as gentle as hecould.
And I believe he actually saidit was two years, but I do
remember hearing at some pointthat I was gonna have it until I
was either an adult or just forthe rest of my life.
I have a very rare case of it.
Normally in children, it's onlyfor like a month.
Wow.
During that time, what did youfeel like the infusions and
(11:05):
treatments that you were given,how did they affect you
physically as well as likeemotionally?
Physically, you know, can aneedle plastic tube jammed it to
your wrist every two weeks?
I am not exaggerating in theslightest.
It was twice a month.
It eventually got dragged downto once a month, but still
pretty frequent.
But eventually, I used to belike deathly afraid of needles,
(11:26):
much like my sister, who willnot be in the same room as you
if you even mention them once.
And now, this is kind ofoff-drop topic, but I'm
perfectly fine with them.
I remember one time I was goingto summer camp and I needed to
get like actually no.
I was heading back to school,like middle school, first year,
but I had to get like a tetanusshot, and I was just like, go
ahead, sign the dotted line,sir.
(11:47):
Wow, and gotten used to it.
That's a plus, I guess.
I'm no longer gonna have a spazattack whenever I'm around a
needle.
Yeah.
Wow.
You talk about steroidsaffecting your mood and mental
health.
When did you realize that it wasstarting to change you?
When it started like ending acouple of friendships, due to
(12:10):
just like huge like outbursts.
And then I was just like, hmm.
So before I was on steroids,this didn't happen.
And I noticed they also gave mecataracts, so there might be
other side of it, like, oh yeah.
Yeah.
Well, I'm happy that you wereable to recognize that.
Did you tell your parents or youtold the doctors during that
(12:32):
time?
How did you advocate foryourself?
I'm actually pretty sure becauseback then it was still like a
theory in my end.
I wasn't too sure.
Yeah.
That's like what I believed.
And, you know, but then I alsothought that I was like being an
early bloomer or something.
I don't know.
A lot of like overthinking.
And then I was just toldstraight up, yeah, it's the
steroids.
(12:53):
Oh wow.
What do you think helped yousurvive that season where
friendships were kind of failingand your moods were changing,
and then you had realized whatthe steroids were doing.
I feel like it was just myfamily being there for me all
the time.
I mean, me and my mom had somelike heavy arguments, and I had
that stuff that like to this daywould never dream of saying to
(13:16):
anybody ever.
It was bad.
No.
But both of us have exchangedour apologies to each other
multiple times.
But it was just them like beingthere with me for it, not just
leaving me, since you knowthat's what family's for.
They're supposed to help you outwhen you're, you know, turning
into a red dot man.
Yeah.
I'm sorry that you experiencedthat.
(13:36):
And I appreciate you beinghonest about saying things to
your mom that you regret andthat you all have been able to
reconcile that because I do knowthat during this sensitive time
in your life, sometimes things,you know, your body and your
emotions and everything is atall high.
And sometimes things do come outcompletely wrong.
(13:58):
And I acknowledge you, you'reonly 13, and to realize that
earlier in life is great.
I you talked about Dr.
Weiser a lot, right?
Yeah.
And how he was there and he wasadvocating for you, and he just
seemed to be a really greatdoctor.
What are the things that he didthat you think other doctors can
do when a child is in asituation like you?
(14:20):
He was able, like somehow, I'mpretty sure dude was a wizard or
something.
But I'm pretty sure he was justwhat what do I mean?
I'm pretty sure.
I know this.
Come on.
Sorry.
But he was just able to make melaugh and feel better and
overall just have like a bettermental state.
I remember he called my friendHong.
(14:40):
He's Asian.
But he called my friend Hong theHonger.
Like he gave me two um littledum-dums, whatever they're
called.
I don't know.
And he was like, oh, what's thesecond one for?
He's like, for the honger.
Just unironically with thestraightest face ever.
That's one of my favoritemoments of him.
Yeah.
You love that, his sense ofhumor and how he kept you
(15:02):
laughing and your spiritslifting, huh?
Mm-hmm.
That's beautiful.
You mentioned when you went tothe children's hospital in
Philadelphia that that's whenlike things started to change.
What was that change?
Um Do you remember that time?
Vaguely.
I do remember, you know, as Isaid in the essay, uh, Dr.
Burns mentioning like apotential solution.
(15:23):
Like I was still on thosemedications, and we just kind of
assumed that if I was off ofthem, bad stuff would come back.
And then he was just like, well,let's see if it's true.
And then if it's false, thenkids gonna be fine.
Right.
So then he mentioned that youshould taper off slowly, right?
Yes.
(15:43):
And how did that tapering offslowly affect you?
Do you remember that?
It went pretty good.
I had like a few symptomoutbursts, so we like went back
to the least amount that I couldhave without an outburst.
Like tried the tapering offagain in like a week, and then
hey Presto, no more medicine.
Amazing.
How do you see your life now?
(16:04):
Do you have to continue to takemedicine now, or you I do have
to take Lucinapril forlong-lasting candy damage, but
at that point it's like almostcompletely fixed.
That's wonderful.
That's so great.
Overall, I see my life now.
It's a lot, and I'm here forevery last moment of it since I
know that if I actuallycommitted to some of the things
(16:26):
that I said I would do tomyself, then I wouldn't be able
to have these like greatexperiences.
I wouldn't have been able to doall this wouldn't have been able
to go to middle school.
Yeah, let's talk about that alittle bit.
So you mentioned, I know youdon't want to say the word, and
we don't have to say the wordhere on this podcast, but I'm
okay with saying it if it'llhelp people later get the idea.
(16:50):
Yeah, you mentioned that youwere suicidal and as a young kid
and you're you're just only 13now, but this happened before
13.
What was going through yourmind?
What made you feel that way?
Well, the first time it happenedwas when I was told that I was
gonna be stuck with this for avery, very long time.
And like go ahead, I'm sorry.
(17:18):
One of them was because Iverbally declared that I would
kill myself.
And the other one was because ofa random incident that I just
straight up refused to saywasn't anything suicide related,
but just no just gonna let youuse your imagination there.
(17:39):
Yeah.
When when you were going throughthese feelings, was it because
you were you say you didn't wantto live with this?
Do you not think that a life ofliving with with illness could
be a good life?
I mean, at the moment I justthought that I would like
constantly have these issues,and at that point I was just
(18:01):
like, if that's gonna be mylife, then I don't want it.
Then like I don't want there tobe that life to have.
Were you able to talk to anybodyduring that time?
Able to talk to people, I wasable to get the help I needed,
and I am forever grateful.
During that moment, who did youtrust in telling this to?
(18:23):
Or did you write a letter, ordid you just decide like like
who was the person that pulledthe the alarm and said, no,
we're gonna get Liam help rightnow?
My mom definitely, because um mydad wasn't um, by the way, I
declared that whole first time Iwent to the mental award
(18:43):
children's hospital when Ideclared suicide.
Dad wasn't there.
Pretty sure he had to go do somework related, and that's
perfectly fine by me, honestly,since I feel like it would have
been ten times more like I justI'm just glad that he didn't
have to hear like his child likeat I'm pretty sure I was 10 or
(19:05):
11, just like without a singlehesitation say that he was gonna
kill himself.
My mom was there.
She's always been like a littlebit of like anxiety, and this
definitely dragged it throughthe roof.
So both me and her were kind ofgoing through it.
Yeah.
So her hearing that was justlike, no, he is going to the
mental world right now.
I am not letting my child killhimself.
(19:27):
I'm not even letting him thinkabout it.
We're fixing this.
Absolutely.
I love that your mom advocatedfor you like that.
And Liam, there's some kids outhere that's gonna be listening
to this episode, and there'salso gonna be some parents
listening to this episode andteachers and doctors.
First, let's just speak to thekid.
(19:48):
What would you say to littleyoung Liam that's 10 years old?
What would you say to Johnny orX or whoever may be going
through this right now?
What would you tell them?
So no matter what you're goingthrough, may it be a lost
parent, a disease like mine,just anything traumatic that has
caused you to question whetheror not staying on this planet is
(20:09):
really worth it.
It is, since I promise you thereare going to be people that will
miss you.
And I can just list a few, likethere are going to be relatives,
grandparents, parents, yourfriends, folks like that.
So if you're really gonna thinkabout doing that, the way I kind
(20:31):
of stop myself was kind of stopand think, wait, how would this
impact them?
Because if I commit suicide,then how is that gonna impact my
mom, my dad, my sisters, mybrother, my friends, my grandma,
sweet, sweet grandma.
Yeah, your grandma, yeah, sheloves you so much.
For parents, I would say, if youhave a child that is going
(20:54):
through something problematic,do not, even for a second, turn
their back on them.
I'm not saying I had my backturned.
I'm just saying, fleeze for thelove of everything that is holy,
be there with them, comfortthem, help them get through it.
For doctors, if you are thiskind-there's like two types of
doctors in my mind, there'sphysical and there's mental.
(21:14):
We'll just start like actualdoctors that do like, you know,
doctory stuff.
If you are about to like breaknews to somebody, and like Dr.
Khan did an incredible job atthis, it was just I was already
like steroid crazy, so I feellike no matter what he would
have said, I would have had thesame reaction, unless he just
didn't tell me.
Which just is dishonest.
(21:34):
I'm not saying don't tell, like,let's say, for example, and this
is a very dark example, but Ican't think of anything else at
the moment, you are about totell a child that they have a
terminal case of cancer, oryou're about to tell the parent
that their child has that.
Be as like gentle as you can.
Because I am telling you rightnow, like, for a hundred percent
(21:55):
fact, no matter what you say orhow you say it, they are going
to take that next.
Negatively, but if you are likeblunt about it, then they are
going to take it ten timesworse.
Once again, Dr.
Kron did an incredible job atdoing this.
Yeah.
And then I also had a therapist.
I do not remember her name, butshe was a very sweet lady.
Um, you know, just keep doingwhat you're doing.
(22:18):
You're a therapist for a reason.
That's all I gotta say.
I love that.
One thing that you said at theend of your essay.
You said, Life sucks sometimes.
You were really blunt and frankwith us.
But if you keep going, said itdoesn't mean you have to let it
control you.
What does that mean to you?
(22:43):
It's an adult swarm or somethinglike that.
It does get easier.
Believe every day it getseasier.
But you gotta do it every day.
That's the hard part.
But it does get easier.
I just heard that and I waslike, wow, wow.
All right, sweet.
I'm gonna keep that in my mindnow.
It does.
I love that.
It does get easier.
You're gonna put one foot infront of the next and that in
(23:05):
front of the next.
And they always say the light isat the end of the tunnel, but if
you sit in the middle of thetunnel, it's hard to see the
light.
But if you somehow keep going,even a little momentum is still
momentum, you will eventuallysee the light.
Wow.
You know, this is so beautifulbecause not only did you
survive, you are thriving andyou are giving back in
(23:27):
meaningful ways, the way thatyou're sharing your story right
now.
Because I know that there's manyyoung children, adults too,
people that are suffering fromillnesses and just like
depression, and they're sad andthey're considering the thought
of suicide.
And I just want to say thank youso much for being so vulnerable
with us.
Thank you so much for being you.
(23:50):
Thank you for your sense ofhumor.
Thank you for caring.
Thank you for pushing throughthe pain.
And I'm so thankful that yourparents also advocated and kept
asking the doctors and keptpursuing answers for you.
I don't want to leave thisepisode without asking you.
(24:10):
Do you have anything else thatyou feel that you want to say?
Well, I feel like I would liketo give my thanks to you, the
resilience files, and youspecifically for giving me this
opportunity to go out and tellpeople how I survived this and
how they can go throughsomething like that too.
Actually, fun little plan thatI'm doing, like life goal, a
(24:31):
fundraiser, like a littlewebsite fundraiser stuff, that
is going to be entirelydedicated to research and just
figuring out more like rarediseases that many people don't
know of, since that's basicallywhat I went through, not knowing
what happened to me for a prettylong while.
Three months, it's still prettylong considering the fact that
(24:52):
you're like just turned 10.
Yeah.
It is, I love that.
Wow, Liam, look at you.
You've thrived and you'repushing through, and you're 13,
and you have so much living infront of you.
So I want to say thank you somuch again for sharing your
story.
And this has been the ResilientSpouse Podcast.
I hope that you enjoyed theepisode today with Liam.
(25:13):
Liam is just 13 years old.
And if Liam can push through,you can push through too.
Remember, there is light at theend of the tunnel.
You just have to keep going.
Ending your life is not theanswer.
There are gonna be so manypeople that miss you, and you
have so much purpose here onthis earth.
I'm Carrie Bernanz.
If this episode inspired you,please share it with someone.
(25:36):
If you know a young person,elementary, middle school, high
school, whoever they are, orjust someone going through a
hard time, share this episodewith them.
Let them be inspired and tune infor the next episode.
Thank you so much for joining ustoday.
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