November 30, 2023 • 6 mins
Friends and family of 9-year-old Jace Jones have organized a benefit for the boy, who is fighting Duchenne muscular dystrophy. The event is 2 p.m. Sunday, Dec. 10, at Brass Hall in Marble Falls and features food, live music, a silent auction, and more. Family friend Lori Bingham visited the KBEY studio with Jace's mother, Rachel, to talk about the event.
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(00:00):
KBA one OZ three point nine FMMAC in the morning. Good morning.
Laur Bingham is with me this morning. Lori is Hi Louri. First of
all, Hi, good morning.It's good to have you in the studio.
Laurie is helping to organize a benefitfor Jace Jones. Now, Jace
Jones mom Rachel has the r Barhere in town, and Jace Jones has
been diagnosed with with what they calldm D. What is dm D?
(00:24):
Yeah, so DMD is dishin musculardistropy. It's a muscle wasting disease that
will eventually, you know, asit says, yeah, waste away all
the muscles. Yeah. And wewere talking before we started here, and
you know, it was mentioned thatthe heart is a muscle. I mean
every heart, every muscle in yourbody. It affects every muscle. Yeah,
(00:47):
wow, from head to toe.Yeah, this has got to be
a rough deal. How old isJace Jase's nine? He actually turned ten
on Saturday. Okay, yeah,so the benefit is on December tenth.
Where's it going to be. Tellme all the info. Yeah, we're
going to have it at Brass Hall, which is right across the street from
the ar Bar. We wanted tomake sure that we had a bigger venue
so that everybody could come out andshow some support. Mm hm. Tell
(01:10):
me about some of the costs andsome of the First of all, it's
devastating personally, I'm sure to thefamily and two friends jas you know,
I mean a nine year old kid, I mean that's sweet, you know,
and that's a shame that things happen. But tell me about the costs
some of the things that the famili'shaving to go through. Yeah, So
one of the biggest costs is awheelchair and everything that comes along with the
(01:32):
billchair. You have to be accessible, you have to have ramps, and
then you start to think about otherthings like your car. So those are
those are the biggest factors we're lookingat. Yeah, of course, there's
medications, there's doctors, visits,there's therapies. Those are some of the
things that we are trying to raisemoney for. It comes for and just
basically awareness of DMD. When youask somebody what DMD is or dishings,
(01:56):
there's not a person I haven't heardof that before. Yeah, and there
are some locals that I've as we'regoing around and making awareness of the benefit
that have come in contact with that, and I want to really come together
as a community for not just Jace, but other children and mostly male juveniles.
Is it really okay? So youwant to raise awareness about this thing,
(02:17):
because that's I mean, you hearpeople with muscular dystrophy, and I'm
not discounting that at all, butthis is another kind of that. Huh.
It's very rare, there is nocure, and it mostly affects young
boys. Okay, Typically they're diagnosedbetween four and six years old. Unfortunately,
Jace was misdiagnosed and wasn't diagnosed untilMarch seventeenth of this year, so
(02:43):
this has been affecting him for severalyears now. Yes, yes, it
doesn't, not only you know,physically and mentally, school and at home
and social and those kinds of things. And you think about some of the
costs you're going to have to Youmentioned the vehicle, the wheelchair, which
we talked earlier, and the wheelchairslike this massive thing that you've got to
have. It's just like a wheelchairwith wheels. It's something that is going
(03:05):
to grow with him. It's gonnait's gonna help him be mobile because most
likely by this time next year hewill be in the chair. Okay,
so we think about my wife andI think about at my age, my
wife and I think about we don'twant to live in a house with stairs
anymore. Yeah, but I meanthis is a young family and these are
(03:25):
these are folks that are used tobounding upstairs and doing so. The remodel
of even the living condition that hasto take place too, huh, doorways,
bathtubs, you know, kitchen city. You don't think about that much
stuff. It's the little I wouldn'tsay inconveniences of life, but those conveniences
that we're used to no longer theygo away. Well, we'll tell us
(03:49):
about the event. When is it? So December tenth. It's going to
be from two to five pm.We will have food for donation. There's
going to be a car show,which we're super excited about. There will
be live music John Arthur Martinez.It will be there playing music for us
the entire time, and then we'regoing to do live raffles fifty to fifty
(04:13):
raffles, silent auction. We're asogoing to do live music from six to
ten. I have a lot oflocal artists that want to support Rachel and
the r Bar. We have GeorgeGanghis, we have Chrissy Taylor, we
have Charlie and Courtney Reid, andwe have a wonderful band that is going
to be with us called Mars MiddleAge rock Star. They're local and we're
(04:36):
super excited to have them. Okay, good, and again that's December tenth,
starting at two pm at Brass HallDecember tenth, which is Sunday.
Everybody knows where Brass Hall is ison Third Street and most of us have
probably been there. It is familyfriendly. We want everyone to be a
part of this, and so Iwill be getting with the school district.
I've already reached out to them,so hopefully I will have a flyer going
(04:59):
home with students, if not withthe students, and at least the teachers
will have awareness of that. Sothe car show, the food, I
want to get a bounce houth.If anybody has a bounce outh, I
want to bounce outh buddy. Theelf is supposed to be there. Maybe
another guest will be with us,So we really just we want to make
it a community event, raise awareness, show some support to a woman that
(05:21):
has always been very supportive of ourcommunity, and have some fun. Absolutely,
that's what it's life. Have somefun, get the word out and
do some good pleasure. You're goingto be with friends, you're going to
make new friends, and it's probablygonna be a great day again. Sunday,
December tenth at Brass Hall, startingat too. Laurie Bingham, thank
you and thanks for doing this forthe family. That's really sweet to you.
(05:42):
And I do want to thank everybodythat's been a part of this.
We have Norman Lucas, Dacy Sargalas, Ben Ladesma, Chris Godwin and several
other people that have just outpour ofhow they can help and how to be
a part of it, not onlymonetarily, but you know with items for
auction and gift cards, and weare super thankful for It's a community effort.
So all right, thank you andI hope you have great success with it.
KBA one OZ three point nine FMMAC in the morning. Good morning.
Laur Bingham is with me this morning. Lori is Hi Louri. First of
all, Hi, good morning.It's good to have you in the studio.
Laurie is helping to organize a benefitfor Jace Jones. Now, Jace
Jones mom Rachel has the r Barhere in town, and Jace Jones has
been diagnosed with with what they calldm D. What is dm D?
(00:24):
Yeah, so DMD is dishin musculardistropy. It's a muscle wasting disease that
will eventually, you know, asit says, yeah, waste away all
the muscles. Yeah. And wewere talking before we started here, and
you know, it was mentioned thatthe heart is a muscle. I mean
every heart, every muscle in yourbody. It affects every muscle. Yeah,
(00:47):
wow, from head to toe.Yeah, this has got to be
a rough deal. How old isJace Jase's nine? He actually turned ten
on Saturday. Okay, yeah,so the benefit is on December tenth.
Where's it going to be. Tellme all the info. Yeah, we're
going to have it at Brass Hall, which is right across the street from
the ar Bar. We wanted tomake sure that we had a bigger venue
so that everybody could come out andshow some support. Mm hm. Tell
(01:10):
me about some of the costs andsome of the First of all, it's
devastating personally, I'm sure to thefamily and two friends jas you know,
I mean a nine year old kid, I mean that's sweet, you know,
and that's a shame that things happen. But tell me about the costs
some of the things that the famili'shaving to go through. Yeah, So
one of the biggest costs is awheelchair and everything that comes along with the
(01:32):
billchair. You have to be accessible, you have to have ramps, and
then you start to think about otherthings like your car. So those are
those are the biggest factors we're lookingat. Yeah, of course, there's
medications, there's doctors, visits,there's therapies. Those are some of the
things that we are trying to raisemoney for. It comes for and just
basically awareness of DMD. When youask somebody what DMD is or dishings,
(01:56):
there's not a person I haven't heardof that before. Yeah, and there
are some locals that I've as we'regoing around and making awareness of the benefit
that have come in contact with that, and I want to really come together
as a community for not just Jace, but other children and mostly male juveniles.
Is it really okay? So youwant to raise awareness about this thing,
(02:17):
because that's I mean, you hearpeople with muscular dystrophy, and I'm
not discounting that at all, butthis is another kind of that. Huh.
It's very rare, there is nocure, and it mostly affects young
boys. Okay, Typically they're diagnosedbetween four and six years old. Unfortunately,
Jace was misdiagnosed and wasn't diagnosed untilMarch seventeenth of this year, so
(02:43):
this has been affecting him for severalyears now. Yes, yes, it
doesn't, not only you know,physically and mentally, school and at home
and social and those kinds of things. And you think about some of the
costs you're going to have to Youmentioned the vehicle, the wheelchair, which
we talked earlier, and the wheelchairslike this massive thing that you've got to
have. It's just like a wheelchairwith wheels. It's something that is going
(03:05):
to grow with him. It's gonnait's gonna help him be mobile because most
likely by this time next year hewill be in the chair. Okay,
so we think about my wife andI think about at my age, my
wife and I think about we don'twant to live in a house with stairs
anymore. Yeah, but I meanthis is a young family and these are
(03:25):
these are folks that are used tobounding upstairs and doing so. The remodel
of even the living condition that hasto take place too, huh, doorways,
bathtubs, you know, kitchen city. You don't think about that much
stuff. It's the little I wouldn'tsay inconveniences of life, but those conveniences
that we're used to no longer theygo away. Well, we'll tell us
(03:49):
about the event. When is it? So December tenth. It's going to
be from two to five pm.We will have food for donation. There's
going to be a car show,which we're super excited about. There will
be live music John Arthur Martinez.It will be there playing music for us
the entire time, and then we'regoing to do live raffles fifty to fifty
(04:13):
raffles, silent auction. We're asogoing to do live music from six to
ten. I have a lot oflocal artists that want to support Rachel and
the r Bar. We have GeorgeGanghis, we have Chrissy Taylor, we
have Charlie and Courtney Reid, andwe have a wonderful band that is going
to be with us called Mars MiddleAge rock Star. They're local and we're
(04:36):
super excited to have them. Okay, good, and again that's December tenth,
starting at two pm at Brass HallDecember tenth, which is Sunday.
Everybody knows where Brass Hall is ison Third Street and most of us have
probably been there. It is familyfriendly. We want everyone to be a
part of this, and so Iwill be getting with the school district.
I've already reached out to them,so hopefully I will have a flyer going
(04:59):
home with students, if not withthe students, and at least the teachers
will have awareness of that. Sothe car show, the food, I
want to get a bounce houth.If anybody has a bounce outh, I
want to bounce outh buddy. Theelf is supposed to be there. Maybe
another guest will be with us,So we really just we want to make
it a community event, raise awareness, show some support to a woman that
(05:21):
has always been very supportive of ourcommunity, and have some fun. Absolutely,
that's what it's life. Have somefun, get the word out and
do some good pleasure. You're goingto be with friends, you're going to
make new friends, and it's probablygonna be a great day again. Sunday,
December tenth at Brass Hall, startingat too. Laurie Bingham, thank
you and thanks for doing this forthe family. That's really sweet to you.
(05:42):
And I do want to thank everybodythat's been a part of this.
We have Norman Lucas, Dacy Sargalas, Ben Ladesma, Chris Godwin and several
other people that have just outpour ofhow they can help and how to be
a part of it, not onlymonetarily, but you know with items for
auction and gift cards, and weare super thankful for It's a community effort.
So all right, thank you andI hope you have great success with it.
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