Bobby and Helen Vice and Elizabeth Spears teach us about Morquio Syndrome and Rooting For Robert

Bobby and Helen Vice called in to teach us about Morquio Syndrome and how it effects the life of their son Robert. Elizabeth Spears also talked about an upcoming event at Camp Hi Ho to raise money and awareness for Rooting For Robert coming up this Saturday...

Episode Transcript

(00:00):
Like I said, always people lookingout for each other. I want to
welcome in Elizabeth Spears. Hi,Elizabeth, welcome to the show. Hi.
How are you. Oh, I'mliving the dream. What are you
talking about? Perfect? Oh mygosh. Well, we are so thankful
that you're having us on the showtoday. And I'm joined by my dear
friends, longtime friends, Bobby andHelen Vice, and we're talking about Morchio

(00:23):
syndrome research. Okay, hey,let me say hi to Bobby and Helen.
First. Hello there Vice family.Hello, what's good to have you
on. I know you're the parentsof Robert Weiss and and Elizabeth sent me
this thing that's coming up this Saturday, rooting for Robert, So we're rooting

(00:43):
for your son. Tell me abouthim absolutely, Terry, thanks for having
us. This is Helen and I'mjust you know, many many people in
our community know Robert as just anaverage eight year old little boy. He's
got a huge personality. He wasdiagnosed with a syndrome called Morchio syndrome at
two and a half years old.So while he is out and going to

(01:07):
school and able to do many thingswith Pierce his age, he also has
a lot of challenges along the waythat come with a rare genetic disease that
he does have called Morchio syndrome.And I'll let Bobby talk about that a
little bit. Yeah, no,sure, that's great and thanks again for
having us on. So, Morchiosyndrome is one of these rare diseases one
three hundred thousand habit it's it's arecessive disease. And the basically Robert doesn't

(01:34):
generate an enzyme that you need tobreak down sugars in your body. And
when you don't break down this typeof sugar, you can have a lot
of effects on your body, likeyou know, heart and eyes and ears
that are damaged, but you alsohave some severe bone deformities. So Robert
has had multiple surgeries at this point, He's had four vertebrae fused, he's

(01:57):
had hips constructed, he's had hislegs reconstructed. But the surgeons have done
amazing work. He will be likelyhe will have extreme short stature, which
caused a lot of health effects.And so one of the things that we
learned when Robert was diagnosed about fivesix years ago now is that there was
no research going on in this area. So we reached out to the community,

(02:22):
and we started doing some smaller fundraisersand then in twenty twenty one we
had our first annual fundraiser, andfrom the fall of twenty one through the
fall of twenty three, we raisedabout one point six million dollars that has
been specifically earmarks towards treatment and cureresearch. There is a treatment out there

(02:45):
for Morcuo syndrome. It's just notvery effective. It's not helping him grow,
it is not helping the bone correction. So that's our goal, and
to our knowledge, we're the onlyfolks in the world that are trying to
do this on this scale. Andright now we've got about twelve different studies
going through five research groups, goingfrom San Francisco to London, England,

(03:07):
and a lot of that support hascome almost all of it has come from
the Louisville area. It's really remarkablewhat's what we've been able to do.
Robert, as Helen mentioned, isvery charismatic and I think people want to
help, and some of those folksare like our friend Elizabeth here and camp

(03:30):
Higho. They've been great friends torooting for Robert, and not only to
rooting Robert, but to Robert individually. Yeah, So I don't know,
Elizabeth you want. I'm glad alittle bit about what you are. I'm
glad you told me about his personalitya little bit too, because obviously he
struggles for an eight year old.I mean, that's just overwhelming. So
God bless all of you for youknow, just going in deep diving to

(03:51):
do what you can in terms ofresearch to help your baby, that's for
sure. So Elizabeth, tell meabout this Rooting your Robert project on Saturday,
just piggybacking off of Bobby. Ifyou walk in the room, Robert
will just light you up. Andhe is a born to be comedian,
so he has the best future infront of him and he just is a

(04:13):
bright light in our world. ButI want everybody to know about this event
that we're hosting this Saturday. It'sgoing to be at Camp High Ho which
is in Shelby County. And sograteful for Blaine and Carson Lawrence for giving
their space for us to hold thisevent. And don't be scared, but
it's going to be a workout,okay in this beautiful concrete building. It's

(04:39):
so big. It has these beautifulgarage doors that just open up. It's
covered. We're gonna have the nicefresh air coming in and the scenery is
incredible. It's on a farm andyou're gonna be looking out while you're working
out to a beautiful pond flowing fields, and we'd love for you to join
us. It is going to bea HIT class. For those of you

(05:00):
that don't know what that is,it is high intensity interval training. However,
it again, it's not scary.This is very functional movement, very
basic movement. You're allowed to takebreaks, you're allowed to breathe through your
mouth, so modifications welcome. Itis simply about coming together and moving as

(05:20):
a community and bringing more education andresources to help my friend's son. So
well, that's great, Yeah,a great event. Yeah. The HIT
deal is something people can do attheir own level. So yeah, I
don't want people feel like they're inthe Marine Corps or something. It's just
I will be at a very lowlevel. Me too, Bobby. I

(05:43):
know, I know the drill,Bobby, I stay in the back line
all the time and these workouts.But yeah, so that should not deter
anyone. It's going to be twentyfive dollars and we are having this fundraiser
Rain or Shine and then afterwards we'regoing to have a couple of giveaways and
Rainbow Blossom of Louisville has donated freshcold pressed juice for everybody to sample afterwards,

(06:09):
and you're welcome to stay and hangout on the farm. I will
just say one thing. We wantyou to wear sneakers, your tennis shoes,
and bring a water and it's justgoing to be for fun, so
no pressure, no expectation, justcoming together as a community. And I'll
be in the back line there withGary Lawrence if he's not cutting the grass,
right, That's what he does everytime I text Gary's up, I'm

(06:31):
cutting the grass. I got nineteenmore acres to go. We're gonna make
sure he's out there the famous Camphigh Ho that's on Ache and Road.
And it's Saturday ten till noon andwe're all rooting for Robert. That's a
sweet picture of him on the cardyou sent me, Terry. We will

(06:53):
send people to rooting for Robert dotorg and there is a link in the
Get Involved tap to sign up forSaturday very good rooting for Robert dot org.
All right, Vices, thank youso much, Elizabeth. Great talking
to you as well. Thank youall so much. Okay, thank you
for having us. You bet yourbest of luck, best of luck to
you the whole family. All right, that's the Vice family talking about their

(07:14):
eight year old has just been putthrough all kinds of stuff and he is
a sweet child. Rooting for Robertdot Org's the website see Saturday Little Workout
class ten till noon. Sounds perfect. And we're back at a few on
news radio eight forty whas