February 5, 2024 • 16 mins
Sunny Listener Spotlight: Jennifer talks about Rare Disease awareness and how it impacts her and her Houston family Thank you to Gallery Furniture for sponsoring this podcast!
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Episode Transcript
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(00:00):
So she's a Sunny listener, she'sa mom, and she wanted us to
promote Rare Disease Day. And Iwas like, Jennifer, why don't we
talk about your family on my podcast? So she is my guest this week,
and I want to thank Mattress Macand Gallery Furniture for generously sponsoring my
podcast all the time. Jennifer,it's so cool I get to see you.
(00:20):
I've spoken to you on the radio, never got to see your pretty
face. Tell us how this allwent down. You're a Sunny listener who
became a winner and I asked youa question and then you end up on
the podcast, So tell us aboutwhat happened that day. So I listened
to you guys all the time.I think I've called one couple different times,
(00:40):
and in the past I've always wantedto I've emailed in before asking about
Rare Disease Day or how can Iget an idea for a show kind of
put out on the radio, andI didn't receive her response, and so
this time I was like, youknow what, at the very end of
this, when I know she's gonnalike ask for my information and then she's
going to get off but I'm goingto just shoot in real quick and say
(01:00):
you can ask you a question,and you said yes, So I very
much appreciate it. I this isfar more than what I was expecting.
I really just wanted to shout outon the day of and this is this
is actually very exciting. Well it'syou. You mentioned your son. I
did, yes, And in thewhen I was getting your information, I
(01:21):
think you were on Battle of theVerbs, and I asked you about what
you said. You're you just movedand I was like, well, how
do you like your new neighborhood andyou said, well, my commutes a
lot less, and then you startedto talk about your son. Yes,
that's what intrigued me. Yes,So previously when we where we were living,
I was on the road about fourhours every day. I would drive
(01:44):
my daughter to school. We livedkind of out in the country, so
we had to commute her to herschool, and we passed up a couple
different elementary schools just to get tohers because of where she was zoned.
And then my son was in therapyand sugar Land, and so I would
have to go another hour or thatway to get him to therapy, and
then another thirty minutes into Houston forwork, and then at the end of
(02:05):
the day you turn around and todo that all again. So it equated
about four hours every day. Andreally, after about a year of doing
that, my husband and I talkedand I just told him, I said,
I I can't physically do this anymore. It's it's emotionally draining, it's
tiring. I'm not the best momand wife that I could be for all
of you because I'm just I'm justtrying to get through to the end of
(02:28):
the day. So we talked aboutit a lot and ended up deciding to
move to Needville. So there's alot there's a lot of benefits from it.
We're in a smaller town, whichis great because more you get to
know more people. We're still inthat newness phase where we're still meeting people,
getting to know the school that he'sgoing to be a part of one
day. Currently my daughter's going tothat elementary school and she's loving it.
(02:53):
And then we're closer to all theresources that we need for Aaron, the
therapy and sugar Land and than youknow me for work. And as he
starts getting older, he's for rightnow, he'll be five in April,
and there's just different things that youknow aren't available in every town that you
would have for a typical child.So you know, if he wants to
(03:14):
do any kind of baseball or tball or anything like that, right now,
we don't have that, and wedidn't have it where we were.
We would have to travel really farto get to it. So as he
starts coming into those things, we'regoing to be closer to those kinds of
activities for him. Now, tellus about Aaron, because Aaron is you,
He's he's special needs, and tellus the story of Aaron. So
(03:36):
Aarin is He's sweet, loving littleboy. He loves to hug. That's
one of the biggest things about hissyndrome. It's called Smith Meganness syndrome.
Would say it again, Say itslowly. It's Smith Mecginnis syndrome. It's
named after the two doctors who foundedit, Smith McGinnis. Yes, ma'am,
it is the best way that I'veever described it in. One of
(03:57):
the doctors told me that it wasprobably the way to describe it is it
is a mixture of Down syndrome andautism. Then it's kind of the worst
and best of both. You've gotthe very loving, very happy, very
easy to get along with, butthen you've got that quirky like I'm going
to just go off and I haveno idea why I'm doing this. So
(04:19):
the behavior aspects of it. Healso has a flips ter hedium rhythm,
which means he is he's up atnight and he sleeps during the day or
he tries to. But we haveto do our very best to keep him
from doing that. But mostly he'sjust a sweet, loving little boy.
He loves his sister, loves hismom and dad. He remembers people even
(04:42):
when he hasn't seen them in foreveror isn't used to being around them.
He's just a sweet little thing.So you want to raise awareness about this
type because I've never heard of it. I mean, I've spoken with lots
of Down syndrome, but Down syndromeand autism is something that's new to me.
Yeah, So just kind of like, I've looked at some of the
(05:03):
facts too for you guys, justso I wasn't misquoting, and I was
looking at the CDC. So Downsyndrome effects about one in twelve hundred people.
Autism is one in thirty six ourdiagnosis is one in fifteen to twenty
five thousand people. In order forsomething to be considered a rare disease,
(05:24):
you have to have fewer than onein two hundred thousand Americans. So that's
why we are considered a rare disease. Most doctors, when I go in
and talk to them, have notheard of smith Meghana syndrome. I am
Aaron's advocate in every aspect of this. Most of them they're like, Okay,
well, so we have as geneticistsand I have. I'm lucky that
(05:46):
we are in Houston, in thearea that we're at because Sexist Children's has
a clinic designated just for us SEMESHchildren, but it's one of five in
the nation. So we are luckyin that aspect. And I'm sure a
lot of special needs pairing, especiallyones of children with rare diseases, don't
consider themselves lucky. I am.I have a higher availability of help than
(06:10):
what most of them will get.A lot of parents are having to travel
to come to these different places,and if you're in the middle of the
United States, you're probably traveling reallyfar to one of the far ends of
our country to get the help thatyou need otherwise you are in every way
is definitely the advocate and the onetelling the doctors this is what it is.
And most of the time they don'tbelieve you because they're the doctor and
(06:32):
they know mohere, they've been inmedical school. So who are you.
You're the mom, you're the dad. You don't know what you're talking about,
but I do. I've had topush, like one of the biggest
aspects we have with Aaron, especiallyright now, and we're still dealing with
it, probably will for most ofhis life. His ears constantly getting your
infections. I have been told earsare ears, well, ears are not
(06:54):
just ears. Ears are different whenit comes to our kids. His ear
works differently and you can't just dowhat you typically do for a regular child
and it doesn't work. And sowe're now we are on our fifth set
of tubes in four years. Wow, they've already fallen out. They lasted
three months, and we are nowgoing to be asked to see I think
(07:15):
it is now our fourth and tto have a new procedure that hasn't been
done in kids his age, tosee if there's something they can do for
him. How do you keep yourselfgoing I was a mom of five,
get up for work at three inthe morning. I mean, it was
brutal, but the kids were healthy, they were obnoxious. It was a
typical scenario. You've got this preciouschild, You're dealing with the medical community
(07:41):
that just doesn't know how do youkeep yourself going. So one of the
things that I found, because itwas very difficult, I think the first
year of his diagnosis, like thefirst two years, was like we really
didn't even know what was going on, just we had a difficult child.
Then we got his diagnosisteen months andI think that first that first year of
(08:03):
his diagnosis, we had a gameplan. We had a head to toe
evaluation. We needed to know whatdoes his body physically do? Was that
you're doing Jennifer was that that washis geneticist today. They were like,
we need to have we need tomake sure you know, his heart is
good, his head is good.We've done this, we've done that,
and we want to make sure wedo our due diligence because there's like some
(08:26):
of the kids have some more severeissues as far as holes in the heart,
heart conditions, kidney issues, liverissues. We're lucky and again I
say that we are in a moremild physically aspect of all that. Now,
Aaron does have a misshaved heart andthere are some aspects of that that
we have to keep an eye on, but iguas of right now, it
doesn't affect him in his daily life. So we spent that first year just
(08:48):
very busy keeping up with doctor's appointments, what is next on my checklist?
And then I had this whole kindof like gap year of I don't have
anything to fill my time, thento think about what's wrong. What am
I going to now miss out onas a future parent, Like I'm not
going to have that typical my childgrows up, my child leaves my house.
(09:09):
Now I'm just a grandma, likeI am, And yes, at
thirty six, I'm thinking of thosethings. The rest of my life will
be spent being a caregiver for somebodyelse and living my life for someone else.
So it kind of I had likea really dark year actually where I
had not just Aaron, we hadsome loss of family, just just lots
(09:31):
of friends, just a hard,hard year. And then I had a
fellow mom a in a share groupthat we're in. She shared a video
about something called the SMS Research Foundation, and I started watching this video.
I shared it with my husband becausehe had made me watch some videos on
Netflix about crisper technology and gene therapyand this this video that I saw that
(09:58):
this moment posted. I was like, this is exactly what that video was
talking about. Am I right?And so he watched it. He was
like, oh my gosh. Yes. So we found the SMS Research Foundation
and they are doing research to tryto help give back our kids what they're
missing if they can figure out.And I say that lightly, he's missing
(10:20):
his genes, He's not missing youknow, love and affection, but he's
missing the ability to live a normallife. And with that, his sister
eventually will not be able to livea normal life, because there's that expectation
as a parent that I hope mydaughter would want to take over for her
(10:41):
brother and not just put him somewhere. And at the same time, there's
the hope that maybe we can givehim a future that's just like hurts.
Maybe they can be normal. Maybe. So that's what gives me the ability
to keep going up, this hopethat we're going to find the answer.
And if I'm being naive and wedon't find it for my child, Maybe
(11:01):
we find it for someone else oneday and we help someone else. So
again, I'm not living just forme and my children. I'm living to
help spread awareness, help spread thehope that we can all have a better
life one day. That's amazing.What do you do for a living?
What were you doing before you realizethat your child is going to need you.
(11:22):
I'm still doing what I was doing, just not on a completely full
time scale. I am a projectassistant for a construction company in Houston.
We build all over Texas. Well, we will build all over the country
actually, but our primary basis inHouston, So I just keep doing that.
(11:43):
During COVID, I worked from homefor a while because we didn't know
how COVID would affect Aaron. Andthen eventually it also became Aaron can't go
to daycare. He is too aggressive, he will hurt other kids, so
you couldn't just put him into adaycare, and so I had to go
through and find a solution to that, which is ABA therapy, which is
like behavioral therapy. So he's inthat currently and he's been there for almost
(12:07):
two years before he'll be able togo into a public school system. You
know, Jennifer, You're gonna keepfinding angels in your path because you keep
searching. I mean, I willkeep looking for people to help. Yes,
and you do you do? LikeI said, I wasn't even looking
for this. I wasn't even lookingto talk about SMS. I was looking
just to get you guys to doa shout out when Rare Disease Day comes
(12:30):
out because there are so many otherparents like me and my husband. It's
you know, it's not all justabout him and his diagnosis. There's thousands
of other families that are affected,and they have other rare diseases that aren't
even like Eron's. I've got afriend in the Woodlands area whose son has
Batton's disease, and she has raisedsuch awareness over the years. Our kids
(12:54):
went to kindergarten together, and that'swhen the disease started affecting this perfectly normal
child. It's again, it's achromosome type situation. And I bet people
would want to get in touch withyou. Are you are you making yourself
available? Is there right group thatyou belong to? I do I belong
to the If you go to SMSResearch Foundation dot org, I am on
(13:16):
there. I don't know exactly howyou can reach out to me. I
can give you my information. Ifthere's ever parents that wanted to reach out,
we'll post it. When we putthis up on our social media,
we'll post your information. If youdon't mind, Yes, no, that's
absolutely fine. One of the thingslike, so it's weird, like I
have never seen myself as like asomeone who could be like the roadmap for
(13:39):
someone else. And it's one ofthe things that my husband and I have
started doing. Like we have someother friends from work that their kid was
starting to show these different symptoms,and I always like tell them to reach
out to me, let me help. Like I've not only learned with Aaron.
There's so many aspects of it,between the doctors and the insurance company,
and then just you know, justin general, like you go to
(14:00):
grocery store and how do you behaveYou've got to just kind of ignore,
like what everybody else is doing.If they're staring at you because your kids
throw in a fit, it's okay, just say hi, smile. Most
of them they really aren't judging you. They're they really are probably just kind
of curious, like what's going on. Some of them might be my son
doesn't show the typical signs of beingspecial needs, so in most cases they
(14:22):
probably think I'm just a bad momwho's giving into their child's fit. And
I'm like, well, that's fine. That yeah, I probably am.
But there's a thousand other parents likeme to do that too, So it's
you know, I'm definitely about helpingothers too. It's not like I said,
it's not about just us. It'sit's helping people find their path too.
(14:43):
So yes, I would. Iwould love for you to have our
information. I'm going to suggest somethingto you, and I don't know if
you thought about this, maybe yourhusband mentioned it. You've got the face
for TikTok and social media. Youcan do no, I'm serious, you
could do. You could do tutorialson TikTok. You could have little Aarin
on. You could show what youdo to calm him down. Do you
(15:05):
know what a resource you could beto a mom who's scrolling through in her
private time, her quiet time,and she sees your face and your little
boy and you're giving a tip thatmight change her life. I'm just putting
it out there, not saying yousho we'll have to think about that.
I have something to think about that. There is a reason why you and
I had to meet on my podcast. Maybe that was the idea. Maybe
(15:28):
I'm think i'd have to learn howto use TikTok that you have to learn.
I'm serious, it's a little Younow have a platform and your husband
could do the videos like my husbanddoes with me. I'm telling you you
could be a great resource. Now, I want you to promise, now
that we know each other, youhave to still call in to win prizes
on someone. So I plan onit. I was going to call this
(15:48):
morning because I knew the song,but I was like, yeah, I
know, I just went last week. I probably shouldn't. Well next time.
Is Aaron verbal? Like can hespeak and everything? He's not verbal
yet he had a few words hedoes say. Now Abby is Abby's like,
oh, you won on the radioagain? Have her come on then,
because you know that's it's so importantto make sure she gets a lot
of attention since he's always getting allthe attention. We want tickets to Pink,
(16:12):
and so she and I went togo see Pink. I didn't realize
on a Thursday night that a concertwas going to start as leap as it
did, so I took her hand. We had to leave early, yeah,
but still it was still fun.Well, you guys bring the kids
up, they can tour the radiostation. I would love to meet the
family and just put TikTok in theback of your mind because you might be
(16:33):
or Instagram or YouTube. You mightbe a great resource to moms who are
dealing with a child with a raredisease, and that might be the way
that you can give back to thecommunity. So thank you. I appreciate
it. Well, it was greatto meet you, Jennifer, and I'm
glad you reached out to us.You are special to us, and I'm
glad you and your family are listenersto Sonny. Thank you
So she's a Sunny listener, she'sa mom, and she wanted us to
promote Rare Disease Day. And Iwas like, Jennifer, why don't we
talk about your family on my podcast? So she is my guest this week,
and I want to thank Mattress Macand Gallery Furniture for generously sponsoring my
podcast all the time. Jennifer,it's so cool I get to see you.
(00:20):
I've spoken to you on the radio, never got to see your pretty
face. Tell us how this allwent down. You're a Sunny listener who
became a winner and I asked youa question and then you end up on
the podcast, So tell us aboutwhat happened that day. So I listened
to you guys all the time.I think I've called one couple different times,
(00:40):
and in the past I've always wantedto I've emailed in before asking about
Rare Disease Day or how can Iget an idea for a show kind of
put out on the radio, andI didn't receive her response, and so
this time I was like, youknow what, at the very end of
this, when I know she's gonnalike ask for my information and then she's
going to get off but I'm goingto just shoot in real quick and say
(01:00):
you can ask you a question,and you said yes, So I very
much appreciate it. I this isfar more than what I was expecting.
I really just wanted to shout outon the day of and this is this
is actually very exciting. Well it'syou. You mentioned your son. I
did, yes, And in thewhen I was getting your information, I
(01:21):
think you were on Battle of theVerbs, and I asked you about what
you said. You're you just movedand I was like, well, how
do you like your new neighborhood andyou said, well, my commutes a
lot less, and then you startedto talk about your son. Yes,
that's what intrigued me. Yes,So previously when we where we were living,
I was on the road about fourhours every day. I would drive
(01:44):
my daughter to school. We livedkind of out in the country, so
we had to commute her to herschool, and we passed up a couple
different elementary schools just to get tohers because of where she was zoned.
And then my son was in therapyand sugar Land, and so I would
have to go another hour or thatway to get him to therapy, and
then another thirty minutes into Houston forwork, and then at the end of
(02:05):
the day you turn around and todo that all again. So it equated
about four hours every day. Andreally, after about a year of doing
that, my husband and I talkedand I just told him, I said,
I I can't physically do this anymore. It's it's emotionally draining, it's
tiring. I'm not the best momand wife that I could be for all
of you because I'm just I'm justtrying to get through to the end of
(02:28):
the day. So we talked aboutit a lot and ended up deciding to
move to Needville. So there's alot there's a lot of benefits from it.
We're in a smaller town, whichis great because more you get to
know more people. We're still inthat newness phase where we're still meeting people,
getting to know the school that he'sgoing to be a part of one
day. Currently my daughter's going tothat elementary school and she's loving it.
(02:53):
And then we're closer to all theresources that we need for Aaron, the
therapy and sugar Land and than youknow me for work. And as he
starts getting older, he's for rightnow, he'll be five in April,
and there's just different things that youknow aren't available in every town that you
would have for a typical child.So you know, if he wants to
(03:14):
do any kind of baseball or tball or anything like that, right now,
we don't have that, and wedidn't have it where we were.
We would have to travel really farto get to it. So as he
starts coming into those things, we'regoing to be closer to those kinds of
activities for him. Now, tellus about Aaron, because Aaron is you,
He's he's special needs, and tellus the story of Aaron. So
(03:36):
Aarin is He's sweet, loving littleboy. He loves to hug. That's
one of the biggest things about hissyndrome. It's called Smith Meganness syndrome.
Would say it again, Say itslowly. It's Smith Mecginnis syndrome. It's
named after the two doctors who foundedit, Smith McGinnis. Yes, ma'am,
it is the best way that I'veever described it in. One of
(03:57):
the doctors told me that it wasprobably the way to describe it is it
is a mixture of Down syndrome andautism. Then it's kind of the worst
and best of both. You've gotthe very loving, very happy, very
easy to get along with, butthen you've got that quirky like I'm going
to just go off and I haveno idea why I'm doing this. So
(04:19):
the behavior aspects of it. Healso has a flips ter hedium rhythm,
which means he is he's up atnight and he sleeps during the day or
he tries to. But we haveto do our very best to keep him
from doing that. But mostly he'sjust a sweet, loving little boy.
He loves his sister, loves hismom and dad. He remembers people even
(04:42):
when he hasn't seen them in foreveror isn't used to being around them.
He's just a sweet little thing.So you want to raise awareness about this
type because I've never heard of it. I mean, I've spoken with lots
of Down syndrome, but Down syndromeand autism is something that's new to me.
Yeah, So just kind of like, I've looked at some of the
(05:03):
facts too for you guys, justso I wasn't misquoting, and I was
looking at the CDC. So Downsyndrome effects about one in twelve hundred people.
Autism is one in thirty six ourdiagnosis is one in fifteen to twenty
five thousand people. In order forsomething to be considered a rare disease,
(05:24):
you have to have fewer than onein two hundred thousand Americans. So that's
why we are considered a rare disease. Most doctors, when I go in
and talk to them, have notheard of smith Meghana syndrome. I am
Aaron's advocate in every aspect of this. Most of them they're like, Okay,
well, so we have as geneticistsand I have. I'm lucky that
(05:46):
we are in Houston, in thearea that we're at because Sexist Children's has
a clinic designated just for us SEMESHchildren, but it's one of five in
the nation. So we are luckyin that aspect. And I'm sure a
lot of special needs pairing, especiallyones of children with rare diseases, don't
consider themselves lucky. I am.I have a higher availability of help than
(06:10):
what most of them will get.A lot of parents are having to travel
to come to these different places,and if you're in the middle of the
United States, you're probably traveling reallyfar to one of the far ends of
our country to get the help thatyou need otherwise you are in every way
is definitely the advocate and the onetelling the doctors this is what it is.
And most of the time they don'tbelieve you because they're the doctor and
(06:32):
they know mohere, they've been inmedical school. So who are you.
You're the mom, you're the dad. You don't know what you're talking about,
but I do. I've had topush, like one of the biggest
aspects we have with Aaron, especiallyright now, and we're still dealing with
it, probably will for most ofhis life. His ears constantly getting your
infections. I have been told earsare ears, well, ears are not
(06:54):
just ears. Ears are different whenit comes to our kids. His ear
works differently and you can't just dowhat you typically do for a regular child
and it doesn't work. And sowe're now we are on our fifth set
of tubes in four years. Wow, they've already fallen out. They lasted
three months, and we are nowgoing to be asked to see I think
(07:15):
it is now our fourth and tto have a new procedure that hasn't been
done in kids his age, tosee if there's something they can do for
him. How do you keep yourselfgoing I was a mom of five,
get up for work at three inthe morning. I mean, it was
brutal, but the kids were healthy, they were obnoxious. It was a
typical scenario. You've got this preciouschild, You're dealing with the medical community
(07:41):
that just doesn't know how do youkeep yourself going. So one of the
things that I found, because itwas very difficult, I think the first
year of his diagnosis, like thefirst two years, was like we really
didn't even know what was going on, just we had a difficult child.
Then we got his diagnosisteen months andI think that first that first year of
(08:03):
his diagnosis, we had a gameplan. We had a head to toe
evaluation. We needed to know whatdoes his body physically do? Was that
you're doing Jennifer was that that washis geneticist today. They were like,
we need to have we need tomake sure you know, his heart is
good, his head is good.We've done this, we've done that,
and we want to make sure wedo our due diligence because there's like some
(08:26):
of the kids have some more severeissues as far as holes in the heart,
heart conditions, kidney issues, liverissues. We're lucky and again I
say that we are in a moremild physically aspect of all that. Now,
Aaron does have a misshaved heart andthere are some aspects of that that
we have to keep an eye on, but iguas of right now, it
doesn't affect him in his daily life. So we spent that first year just
(08:48):
very busy keeping up with doctor's appointments, what is next on my checklist?
And then I had this whole kindof like gap year of I don't have
anything to fill my time, thento think about what's wrong. What am
I going to now miss out onas a future parent, Like I'm not
going to have that typical my childgrows up, my child leaves my house.
(09:09):
Now I'm just a grandma, likeI am, And yes, at
thirty six, I'm thinking of thosethings. The rest of my life will
be spent being a caregiver for somebodyelse and living my life for someone else.
So it kind of I had likea really dark year actually where I
had not just Aaron, we hadsome loss of family, just just lots
(09:31):
of friends, just a hard,hard year. And then I had a
fellow mom a in a share groupthat we're in. She shared a video
about something called the SMS Research Foundation, and I started watching this video.
I shared it with my husband becausehe had made me watch some videos on
Netflix about crisper technology and gene therapyand this this video that I saw that
(09:58):
this moment posted. I was like, this is exactly what that video was
talking about. Am I right?And so he watched it. He was
like, oh my gosh. Yes. So we found the SMS Research Foundation
and they are doing research to tryto help give back our kids what they're
missing if they can figure out.And I say that lightly, he's missing
(10:20):
his genes, He's not missing youknow, love and affection, but he's
missing the ability to live a normallife. And with that, his sister
eventually will not be able to livea normal life, because there's that expectation
as a parent that I hope mydaughter would want to take over for her
(10:41):
brother and not just put him somewhere. And at the same time, there's
the hope that maybe we can givehim a future that's just like hurts.
Maybe they can be normal. Maybe. So that's what gives me the ability
to keep going up, this hopethat we're going to find the answer.
And if I'm being naive and wedon't find it for my child, Maybe
(11:01):
we find it for someone else oneday and we help someone else. So
again, I'm not living just forme and my children. I'm living to
help spread awareness, help spread thehope that we can all have a better
life one day. That's amazing.What do you do for a living?
What were you doing before you realizethat your child is going to need you.
(11:22):
I'm still doing what I was doing, just not on a completely full
time scale. I am a projectassistant for a construction company in Houston.
We build all over Texas. Well, we will build all over the country
actually, but our primary basis inHouston, So I just keep doing that.
(11:43):
During COVID, I worked from homefor a while because we didn't know
how COVID would affect Aaron. Andthen eventually it also became Aaron can't go
to daycare. He is too aggressive, he will hurt other kids, so
you couldn't just put him into adaycare, and so I had to go
through and find a solution to that, which is ABA therapy, which is
like behavioral therapy. So he's inthat currently and he's been there for almost
(12:07):
two years before he'll be able togo into a public school system. You
know, Jennifer, You're gonna keepfinding angels in your path because you keep
searching. I mean, I willkeep looking for people to help. Yes,
and you do you do? LikeI said, I wasn't even looking
for this. I wasn't even lookingto talk about SMS. I was looking
just to get you guys to doa shout out when Rare Disease Day comes
(12:30):
out because there are so many otherparents like me and my husband. It's
you know, it's not all justabout him and his diagnosis. There's thousands
of other families that are affected,and they have other rare diseases that aren't
even like Eron's. I've got afriend in the Woodlands area whose son has
Batton's disease, and she has raisedsuch awareness over the years. Our kids
(12:54):
went to kindergarten together, and that'swhen the disease started affecting this perfectly normal
child. It's again, it's achromosome type situation. And I bet people
would want to get in touch withyou. Are you are you making yourself
available? Is there right group thatyou belong to? I do I belong
to the If you go to SMSResearch Foundation dot org, I am on
(13:16):
there. I don't know exactly howyou can reach out to me. I
can give you my information. Ifthere's ever parents that wanted to reach out,
we'll post it. When we putthis up on our social media,
we'll post your information. If youdon't mind, Yes, no, that's
absolutely fine. One of the thingslike, so it's weird, like I
have never seen myself as like asomeone who could be like the roadmap for
(13:39):
someone else. And it's one ofthe things that my husband and I have
started doing. Like we have someother friends from work that their kid was
starting to show these different symptoms,and I always like tell them to reach
out to me, let me help. Like I've not only learned with Aaron.
There's so many aspects of it,between the doctors and the insurance company,
and then just you know, justin general, like you go to
(14:00):
grocery store and how do you behaveYou've got to just kind of ignore,
like what everybody else is doing.If they're staring at you because your kids
throw in a fit, it's okay, just say hi, smile. Most
of them they really aren't judging you. They're they really are probably just kind
of curious, like what's going on. Some of them might be my son
doesn't show the typical signs of beingspecial needs, so in most cases they
(14:22):
probably think I'm just a bad momwho's giving into their child's fit. And
I'm like, well, that's fine. That yeah, I probably am.
But there's a thousand other parents likeme to do that too, So it's
you know, I'm definitely about helpingothers too. It's not like I said,
it's not about just us. It'sit's helping people find their path too.
(14:43):
So yes, I would. Iwould love for you to have our
information. I'm going to suggest somethingto you, and I don't know if
you thought about this, maybe yourhusband mentioned it. You've got the face
for TikTok and social media. Youcan do no, I'm serious, you
could do. You could do tutorialson TikTok. You could have little Aarin
on. You could show what youdo to calm him down. Do you
(15:05):
know what a resource you could beto a mom who's scrolling through in her
private time, her quiet time,and she sees your face and your little
boy and you're giving a tip thatmight change her life. I'm just putting
it out there, not saying yousho we'll have to think about that.
I have something to think about that. There is a reason why you and
I had to meet on my podcast. Maybe that was the idea. Maybe
(15:28):
I'm think i'd have to learn howto use TikTok that you have to learn.
I'm serious, it's a little Younow have a platform and your husband
could do the videos like my husbanddoes with me. I'm telling you you
could be a great resource. Now, I want you to promise, now
that we know each other, youhave to still call in to win prizes
on someone. So I plan onit. I was going to call this
(15:48):
morning because I knew the song,but I was like, yeah, I
know, I just went last week. I probably shouldn't. Well next time.
Is Aaron verbal? Like can hespeak and everything? He's not verbal
yet he had a few words hedoes say. Now Abby is Abby's like,
oh, you won on the radioagain? Have her come on then,
because you know that's it's so importantto make sure she gets a lot
of attention since he's always getting allthe attention. We want tickets to Pink,
(16:12):
and so she and I went togo see Pink. I didn't realize
on a Thursday night that a concertwas going to start as leap as it
did, so I took her hand. We had to leave early, yeah,
but still it was still fun.Well, you guys bring the kids
up, they can tour the radiostation. I would love to meet the
family and just put TikTok in theback of your mind because you might be
(16:33):
or Instagram or YouTube. You mightbe a great resource to moms who are
dealing with a child with a raredisease, and that might be the way
that you can give back to thecommunity. So thank you. I appreciate
it. Well, it was greatto meet you, Jennifer, and I'm
glad you reached out to us.You are special to us, and I'm
glad you and your family are listenersto Sonny. Thank you
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