June 20, 2023 • 13 mins
Today is our special bonus episode for this month where we get to the talk with the actual kiddos that we are featuring. Zachary, Amelia and Luke from Foley, Alabama.
These three incredible kids are living with unyielding spirit despite the challenges posed by a rare genetic disease called mucopolysaccharidosis type I (MPS 1). Together, this family weaves a tapestry of love and resilience that transcends the boundaries of hardship and shines a light of hope for others.
Episodes like the one you are about to listen to don’t come about often, but are some of our favorite ways for you to get to know the kids. This conversation is very lighthearted, but extremely endearing. It is shorter than our usual episodes, but just as meaningful. Although we ask them questions about their likes and dislikes, they do share also about their diagnosis and their upcoming surgeries.
Hearing from the kids themselves is beyond refreshing and we hope you enjoy listening as much as we enjoyed recording. I guarantee that you will smile frequently while during this episode.
These three incredible kids are living with unyielding spirit despite the challenges posed by a rare genetic disease called mucopolysaccharidosis type I (MPS 1). Together, this family weaves a tapestry of love and resilience that transcends the boundaries of hardship and shines a light of hope for others.
Episodes like the one you are about to listen to don’t come about often, but are some of our favorite ways for you to get to know the kids. This conversation is very lighthearted, but extremely endearing. It is shorter than our usual episodes, but just as meaningful. Although we ask them questions about their likes and dislikes, they do share also about their diagnosis and their upcoming surgeries.
Hearing from the kids themselves is beyond refreshing and we hope you enjoy listening as much as we enjoyed recording. I guarantee that you will smile frequently while during this episode.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Welcome back to the Ghost Shout Lovepodcast for our special bonus episode this month,
where we get to talk with theactual kiddos that we are featuring,
Zachary, Amelia, and Luke fromFoley, Alabama. All three of these
siblings share the same diagnosis of MPsone, which was largely covered in the
previous episode and is most certainly worthlistening to if you haven't yet. Episodes
(00:29):
like the one you're about to listento don't come around very often, but
are some of our favorite ways foryou to get to know the kids.
This conversation is very lighthearted but extremelyendearing. It is shorter than our usual
episode, but just as meaningful.Although we ask them questions about their likes
and dislikes, they do share abouttheir diagnosis and their upcoming surgeries. I
(00:53):
tell you, hearing from the kidsthemselves is beyond refreshing, and we hope
you enjoy listening to it as muchas we enjoyed recording it. I guarantee
you you're going to smile frequently whilelistening to this conversation. Please take a
second to rate and review and sharethis podcast with a friend and on social
media. These kids deserve their wordsand their laughter and their stories to be
(01:18):
heard. Okay, So I ama lucky lady who gets to sit down
with these three amazing kids and learna little bit about them. You're welcome.
We've got Zachary, Luke, andAmelia. So I want to go
around really quick, and I wantyou to tell me your first name,
(01:40):
how old you are, and let'sdo your favorite movie. So you got
to think about it, and ifyou know Zachary Deino, what yours is?
Okay? So you go ahead lately, Yeah, say I'm Zachary and
tell us your age. I amZacharily Thomas. I am Pullet dam my
favorite movie it's Tetovic hacks all Ridge. Oh, hacks all Ridge, I
(02:06):
have not seen. Are you ready? I'm Luke Thomas and I'm seventy years
old and my favorite babe is Pokemon. Pokemon. That's a good one.
That's a fan favorite in our housetoo. All right, Miss Amelia,
Hi there, I'm Amelia Thomas.I'm eleven and a half in my favorite
(02:29):
movie has to be The Great Showman. Oh that's a great answer. The
music is so good. I loveit. Okay, So, um,
Luke, I want you to tellme three things that you love about Zachary?
(02:49):
One or three things you love aboutyour brother? He plays for right
with me. He's my brother andI love him. Good answers. Why
do you love him because he playsburning with you? Now? Didn't mean
my brother because he was born hewas probably like Zachary. What about Amelia?
(03:10):
What are some things you love aboutyour sister's a goof what's her favorite
things to do? To play withthe watch to see about her? About
me? About her? Oh?Um, I want to see her?
Oh she could draw her painter.Oh you're a painter. I'm not the
(03:32):
best at drawing, so I'm justthe first splatter paint. Oh there's a
famous artist at Splatter Paints. Doyou know who that is? Oh?
Yeah, I take my aunt showedme to Jackson Pollock. No aunt,
Marla. And then what about Luke? What's your favorite thing about Luke?
Um? Probably because he introduced meto his friend Jamie and she's a durable
(04:00):
and sweet Jamie. Luke, Iknow a street girl down the street?
You grow and that is really funny? A little a little watch? Yeah,
okay, how old is she?So? She pretty cool? She
watch call this Amelia. We watchedthe Monet. You watched a Mario movie
(04:26):
with her. Wow, that's apretty big time dressed up? You dressed
up? Did you go on adate like, Oh okay, Mari lp
CHULII. So why didn't you guysreally quick? Zachary, I know that
you like to advocate for what youguys kind of go through on your medical
(04:46):
journey. So can you briefly explainto us what you all, what the
three of you um are facing.We have a wit it call NBF one
wh um um. It's a bumout doy disease. And so that kind
of makes you guys have to bepretty brave a lot. Huh. So
(05:10):
if you, Luke, here's aquestion for you. If you had to
tell a little boy or girl howto be brave, what would you say
to them? This like, don'tbe scared, or you gonna beat chickens.
Don't want to get chickens? Dowe? But oh our roosters scary?
(05:30):
Yeah they're brave, aren't they?Yeah? Yeah, they're likely out
Amelia, what about you? Whatwould you give advice to a little kid
who needs to be brave? Well, it's hard to be brave sometimes,
especially if your face dae something thatyou're not used to completely, So I
say, go hard and be akent. Go hard. I have a
(05:55):
little nightmares. You have worries sometimes, Yeah, people are anxiety. You
have worries about three things? Doyou want to share with your what your
three things are? Do you liketo keep those inside? Okay? Go
ahead? Olmo Almos kind of freaky. Yes, he makes you worry.
(06:17):
He's scared. Yeah, okay,I get that. Do you Power Rangers?
I do? Have you ever watchedlike a new power Rangerer movie?
There's a new one like three,like thirty like saying actors thirty years were
training guys. No, not thatreader apasa the robot one? Oh the
(06:47):
robot Power Rangers. No, reada pulsata I would have. So that's
two things Our Rangers, Elmo andwhat other? Like? What other thing
freaks you out? Have you everheard she man? So? Maybe?
(07:14):
Yeah, cartoons aren't your jam No, but he's also obsessed with them.
He's a sick one. Oh comeon. So right now we are it's
mid May and we're visiting you guys. But your mom has mentioned to me
that you have a big surgery comingup, which you're gonna definitely have to
be brave for explain to us alittle bit what your surgery is going to
(07:35):
entail. Um Oh, well,we'll remove the hip hardware the hip um
or would put in the hip,knees, plates and knees, and fluids
in the ankles. You're gonna putplates in your knees, knees and hardware
in your ankle, screws in hisscrews in his ankle. And then are
(07:58):
you putting hardware back into your hiphip? Yeah? I have shored for
So that's three very big three right, three very big things. So how
are you preparing for that? Ihave one? You want to get it
over with because I had this hardwayonto my hip about seventeen and it's coming
(08:20):
out. Wow. Yeah, itkind of toned down the dahoding lately,
but it's been fine. It's up. The pains amped up a little bit.
Yeah. Well, hopefully you'll feelbetter after your surgery and you can
(08:41):
we can shout some love for youand help your recovery go. Well,
how long is recovery? Do youknow? Six weeks? Will you be
where is surgery happening? Mom?Minneapolis? So will you have to stay
Minneapolis or do you get and thenLuke, you said you've had surgery.
(09:03):
You have had surgery on your hand, both hands, and I've also had
surgery on my leg because I broughtmy leg. Okay, Amelia, have
you had surgery yet? Um,same as Luke. I've only had surgery
on my hands, but nothing toolike, not a major surgery. But
(09:24):
I can't have your surgery. ButI am having one in August. We
don't know when though, So she'shaving the same She's having both of her
hips done, plates in her kneesand screws and her ankles in August.
I'm gonna be a freak as fine, You're not gonna be frankenst yet exacts
(09:45):
final fusion last year. So youguys have had many, many, many,
many reasons that you guys life.And you broke your leg and you
very aware I didn't have to,but I gave leg. Well, you
guys still seem to have facing allthese challenges. You guys have a really
good attitude. Do you guys getthrough this stuff together? Do your mom
(10:07):
and dad help you get through thingswhen you get scared? You guys still
find laughter and find joy. Luke, You're probably the life of the party.
I have a feeling and the ladiesman, ladies man. Yeah,
my goodness, I can't talk aboutpast loves. We'd be here all day.
(10:33):
I can't do that religious way,No, no, ma'am. So
you're helping your mom update the newbornscreenings four MPs one. What made you
want to do that? Then Ihave MPF one. Um, I wanted
(10:56):
the kids to go through thank Freintmanand been helped him get better and been
all of that. That's really good. And you also do that for your
brother and sister here too. Yeah, you're a really good example for them.
What do you want to be whenyou grow up? Politician? A
politician, you'd be a really goodone, Zach. That's a that's a
(11:18):
really good I think you'd be abetter better lawyer. Lawyer, Yeah,
because always barely near Luca out oftrouble making changes. Tell them, are
you're going, oh, I'm goingto watching the date date bawl weeks.
You're going to Washington, d C? For a week? What are you
(11:39):
going to do there? Do everythingthat's at one thing? Then Date Date?
Oh my god everything? Are yougoing to see the White House?
Yeah? Oh my gosh, that'sgonna be incredible I've never been there.
That sounds. Are you going withyour family? Are you going with school
friends? Just a my mom andhand out over there? Mitch, poor
(12:03):
Mitch. What about you? Whatdo you want to be when you grow
up? A video game designer?You'll be a pretty good one. You're
very creative, aren't you. Amelia? What about you? What do you
want to be? Are either whyto being an animator like the from YouTube?
Or get an artist? An artist? You already are one, so
(12:26):
keep going with a professional artist.Yeah, that would be good. Well,
thank you guys for talking with usa little bit. We're excited to
get to know you more in thismonth and hear all your stories. And
Zach, we can't wait to seethe road that you pay for all these
little kids and the difference that youmake. It's awesome work you're doing.
Thank you. At goot Shout Love, we do amazing things for amazing families
(12:50):
with kids on rare medical journeys.Each month we shout love for families through
the sale of creative apparel inspired bythe kids. This months do Small Things
with Great Love design is inspired bya trio of siblings from Foley, Alabama.
Zachary, Amelia and Luke, whoshare a special bond but also a
(13:13):
rare medical diagnosis. Every purchase inJune will be used to help with the
travel expenses to Minnesota for surgeries forthe kids. Visit our website at goshout
dot lov to support Zachary, Ameliaand Luke through the purchase of a T
shirt, hated tank top, Puddyor other items.
Welcome back to the Ghost Shout Lovepodcast for our special bonus episode this month,
where we get to talk with theactual kiddos that we are featuring,
Zachary, Amelia, and Luke fromFoley, Alabama. All three of these
siblings share the same diagnosis of MPsone, which was largely covered in the
previous episode and is most certainly worthlistening to if you haven't yet. Episodes
(00:29):
like the one you're about to listento don't come around very often, but
are some of our favorite ways foryou to get to know the kids.
This conversation is very lighthearted but extremelyendearing. It is shorter than our usual
episode, but just as meaningful.Although we ask them questions about their likes
and dislikes, they do share abouttheir diagnosis and their upcoming surgeries. I
(00:53):
tell you, hearing from the kidsthemselves is beyond refreshing, and we hope
you enjoy listening to it as muchas we enjoyed recording it. I guarantee
you you're going to smile frequently whilelistening to this conversation. Please take a
second to rate and review and sharethis podcast with a friend and on social
media. These kids deserve their wordsand their laughter and their stories to be
(01:18):
heard. Okay, So I ama lucky lady who gets to sit down
with these three amazing kids and learna little bit about them. You're welcome.
We've got Zachary, Luke, andAmelia. So I want to go
around really quick, and I wantyou to tell me your first name,
(01:40):
how old you are, and let'sdo your favorite movie. So you got
to think about it, and ifyou know Zachary Deino, what yours is?
Okay? So you go ahead lately, Yeah, say I'm Zachary and
tell us your age. I amZacharily Thomas. I am Pullet dam my
favorite movie it's Tetovic hacks all Ridge. Oh, hacks all Ridge, I
(02:06):
have not seen. Are you ready? I'm Luke Thomas and I'm seventy years
old and my favorite babe is Pokemon. Pokemon. That's a good one.
That's a fan favorite in our housetoo. All right, Miss Amelia,
Hi there, I'm Amelia Thomas.I'm eleven and a half in my favorite
(02:29):
movie has to be The Great Showman. Oh that's a great answer. The
music is so good. I loveit. Okay, So, um,
Luke, I want you to tellme three things that you love about Zachary?
(02:49):
One or three things you love aboutyour brother? He plays for right
with me. He's my brother andI love him. Good answers. Why
do you love him because he playsburning with you? Now? Didn't mean
my brother because he was born hewas probably like Zachary. What about Amelia?
(03:10):
What are some things you love aboutyour sister's a goof what's her favorite
things to do? To play withthe watch to see about her? About
me? About her? Oh?Um, I want to see her?
Oh she could draw her painter.Oh you're a painter. I'm not the
(03:32):
best at drawing, so I'm justthe first splatter paint. Oh there's a
famous artist at Splatter Paints. Doyou know who that is? Oh?
Yeah, I take my aunt showedme to Jackson Pollock. No aunt,
Marla. And then what about Luke? What's your favorite thing about Luke?
Um? Probably because he introduced meto his friend Jamie and she's a durable
(04:00):
and sweet Jamie. Luke, Iknow a street girl down the street?
You grow and that is really funny? A little a little watch? Yeah,
okay, how old is she?So? She pretty cool? She
watch call this Amelia. We watchedthe Monet. You watched a Mario movie
(04:26):
with her. Wow, that's apretty big time dressed up? You dressed
up? Did you go on adate like, Oh okay, Mari lp
CHULII. So why didn't you guysreally quick? Zachary, I know that
you like to advocate for what youguys kind of go through on your medical
(04:46):
journey. So can you briefly explainto us what you all, what the
three of you um are facing.We have a wit it call NBF one
wh um um. It's a bumout doy disease. And so that kind
of makes you guys have to bepretty brave a lot. Huh. So
(05:10):
if you, Luke, here's aquestion for you. If you had to
tell a little boy or girl howto be brave, what would you say
to them? This like, don'tbe scared, or you gonna beat chickens.
Don't want to get chickens? Dowe? But oh our roosters scary?
(05:30):
Yeah they're brave, aren't they?Yeah? Yeah, they're likely out
Amelia, what about you? Whatwould you give advice to a little kid
who needs to be brave? Well, it's hard to be brave sometimes,
especially if your face dae something thatyou're not used to completely, So I
say, go hard and be akent. Go hard. I have a
(05:55):
little nightmares. You have worries sometimes, Yeah, people are anxiety. You
have worries about three things? Doyou want to share with your what your
three things are? Do you liketo keep those inside? Okay? Go
ahead? Olmo Almos kind of freaky. Yes, he makes you worry.
(06:17):
He's scared. Yeah, okay,I get that. Do you Power Rangers?
I do? Have you ever watchedlike a new power Rangerer movie?
There's a new one like three,like thirty like saying actors thirty years were
training guys. No, not thatreader apasa the robot one? Oh the
(06:47):
robot Power Rangers. No, reada pulsata I would have. So that's
two things Our Rangers, Elmo andwhat other? Like? What other thing
freaks you out? Have you everheard she man? So? Maybe?
(07:14):
Yeah, cartoons aren't your jam No, but he's also obsessed with them.
He's a sick one. Oh comeon. So right now we are it's
mid May and we're visiting you guys. But your mom has mentioned to me
that you have a big surgery comingup, which you're gonna definitely have to
be brave for explain to us alittle bit what your surgery is going to
(07:35):
entail. Um Oh, well,we'll remove the hip hardware the hip um
or would put in the hip,knees, plates and knees, and fluids
in the ankles. You're gonna putplates in your knees, knees and hardware
in your ankle, screws in hisscrews in his ankle. And then are
(07:58):
you putting hardware back into your hiphip? Yeah? I have shored for
So that's three very big three right, three very big things. So how
are you preparing for that? Ihave one? You want to get it
over with because I had this hardwayonto my hip about seventeen and it's coming
(08:20):
out. Wow. Yeah, itkind of toned down the dahoding lately,
but it's been fine. It's up. The pains amped up a little bit.
Yeah. Well, hopefully you'll feelbetter after your surgery and you can
(08:41):
we can shout some love for youand help your recovery go. Well,
how long is recovery? Do youknow? Six weeks? Will you be
where is surgery happening? Mom?Minneapolis? So will you have to stay
Minneapolis or do you get and thenLuke, you said you've had surgery.
(09:03):
You have had surgery on your hand, both hands, and I've also had
surgery on my leg because I broughtmy leg. Okay, Amelia, have
you had surgery yet? Um,same as Luke. I've only had surgery
on my hands, but nothing toolike, not a major surgery. But
(09:24):
I can't have your surgery. ButI am having one in August. We
don't know when though, So she'shaving the same She's having both of her
hips done, plates in her kneesand screws and her ankles in August.
I'm gonna be a freak as fine, You're not gonna be frankenst yet exacts
(09:45):
final fusion last year. So youguys have had many, many, many,
many reasons that you guys life.And you broke your leg and you
very aware I didn't have to,but I gave leg. Well, you
guys still seem to have facing allthese challenges. You guys have a really
good attitude. Do you guys getthrough this stuff together? Do your mom
(10:07):
and dad help you get through thingswhen you get scared? You guys still
find laughter and find joy. Luke, You're probably the life of the party.
I have a feeling and the ladiesman, ladies man. Yeah,
my goodness, I can't talk aboutpast loves. We'd be here all day.
(10:33):
I can't do that religious way,No, no, ma'am. So
you're helping your mom update the newbornscreenings four MPs one. What made you
want to do that? Then Ihave MPF one. Um, I wanted
(10:56):
the kids to go through thank Freintmanand been helped him get better and been
all of that. That's really good. And you also do that for your
brother and sister here too. Yeah, you're a really good example for them.
What do you want to be whenyou grow up? Politician? A
politician, you'd be a really goodone, Zach. That's a that's a
(11:18):
really good I think you'd be abetter better lawyer. Lawyer, Yeah,
because always barely near Luca out oftrouble making changes. Tell them, are
you're going, oh, I'm goingto watching the date date bawl weeks.
You're going to Washington, d C? For a week? What are you
(11:39):
going to do there? Do everythingthat's at one thing? Then Date Date?
Oh my god everything? Are yougoing to see the White House?
Yeah? Oh my gosh, that'sgonna be incredible I've never been there.
That sounds. Are you going withyour family? Are you going with school
friends? Just a my mom andhand out over there? Mitch, poor
(12:03):
Mitch. What about you? Whatdo you want to be when you grow
up? A video game designer?You'll be a pretty good one. You're
very creative, aren't you. Amelia? What about you? What do you
want to be? Are either whyto being an animator like the from YouTube?
Or get an artist? An artist? You already are one, so
(12:26):
keep going with a professional artist.Yeah, that would be good. Well,
thank you guys for talking with usa little bit. We're excited to
get to know you more in thismonth and hear all your stories. And
Zach, we can't wait to seethe road that you pay for all these
little kids and the difference that youmake. It's awesome work you're doing.
Thank you. At goot Shout Love, we do amazing things for amazing families
(12:50):
with kids on rare medical journeys.Each month we shout love for families through
the sale of creative apparel inspired bythe kids. This months do Small Things
with Great Love design is inspired bya trio of siblings from Foley, Alabama.
Zachary, Amelia and Luke, whoshare a special bond but also a
(13:13):
rare medical diagnosis. Every purchase inJune will be used to help with the
travel expenses to Minnesota for surgeries forthe kids. Visit our website at goshout
dot lov to support Zachary, Ameliaand Luke through the purchase of a T
shirt, hated tank top, Puddyor other items.
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