Latest / Tom's Hirschsprung's Podcast / Episode 10 - With Laquita Williamson

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Episode 10 - With Laquita Williamson · Tom's Hirschsprung's Podcast

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Hello, and welcome to episode ten of Tom's Hirshrung's podcast. This week,
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I have three very special guests. I have the Williamson family with me.
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I have Laquita Williamson, and I have Marcus Williamson and Marcus Marcus Junior Williamson.
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Welcome to the podcast. Hi, thank you for having us. Now
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for Laqueta Marcus, you are going to tell us the story of Marcus Junior
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and his Hirshprungs disease. Am I right in saying that Marcus is six at
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the moment, Yes, he'll be seven on the fron Mark Samon. Oh
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wow, so happy birthday for March seven. Thank you that in your own
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time, whenever you're ready, you can go along with the story. Okay,
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Well, Marcus was born March seventh, two thoy seventeen, and it
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was about three days after his birth. He was not wanted to eat,
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he was starting to throw up green bough and he wasn't pooping, So the
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nurses they knew something was wrong, but at the time they didn't know what
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was wrong. So end up they had to transfer us to Karelian Hospital in
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Roanoke, Virginia, And when we got there, they specialized in Hirschbrong cases.
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So when we got there over through the whole time, it was about
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a month, but it seemed like forever that we were there. So they
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did a lot of tests on him to see, you know, what the
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problem could be, and they did a lot of bopsies of his rectum because
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I believed that they kind of had an idea of what it was, but
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they just couldn't say because they didn't they hadn't done the test yet. So
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after a few biopsies, they told me that he was he had her Schparm's
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disease and he had to well he couldn't eat anything because of him not being
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able to poop uh. So they had him on uh ibs and you know,
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getting his nutrients through that, and he was able to eat something called
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stu crost. It was like a like a sweetener that they would give him
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to kind of, I guess help his cravens. So he was there and
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maybe about three weeks after he was born, they did his surgery, a
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pull through surgery, which so with hirschwrong disease, they the colon is closed
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off and they had to go in and cut the diseased part off and at
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the time, they didn't know if they would be able to reconnect his his
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colon back to his rectum or not, because they didn't know how much was
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disease had heirsprungs on it. So they told us that he might have to
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end up having a colostomy bag for a while and after he got a little
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bit older than they could reverse it and do the surgery once his body grew.
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But so they had the surgery and his diseased part was only a few
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centimeters so they didn't have to do the colostomy bag. The surgeon said that
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he was able to reconnect it back to his rectum, so that was a
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blome lesson for us, and so he they did the surgery. It only
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takes like a few hours, and they did the surgery, and then maybe
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I'm not sure, about a week or so after we were able to take
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him home. And I thought that that was going to be it, you
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know, that that was gonna just fix everything. But it it did fix
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the problem. It did fix him not being his his poop not being able
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to come out. They did fix that, but it didn't fix his body.
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So even though he had the surgery, his body still knows that it
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was born with Hirschmong's disease. So we had to learn over time as he
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was growing that he couldn't eat certain things. And at the time I was
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nursing, and I didn't know that that he couldn't have certain things, and
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the surgeon didn't know. He did kind of warn me of it, but
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you know from other case, but he said, every case is different,
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so I would just have to, you know, go through and let go
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through the years or the months rather and see what happens. And and that's
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it was just a terrible time. So everything that I ate that I didn't
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know that his body didn't like was affecting him. Uh So he we went
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through a series of things and then finally the finally his surgeon told us to
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just start giving him. Well when I was feeding him, when I was
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nursing, it was terrible. His bottom was it was terrible. It was
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his poop was so with hirschbrod him. I'll say, his poop was full
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of acid and anytime he ate something that he couldn't have, it would burn
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his bottom. So his his bottom would just be like raws, the rawest
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of the raws. It was like one hundred times the worst diper rash body
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could ever imagine. And so when he got of age to start eating food,
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we started giving him one thing for three days, like so we would
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do I would pre raade his food, so we would do like green beans
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for three days, and if the green beans didn't bother him, it didn't
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cause him to have acidic poop, then we knew that he could have green
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beans. And then after that three days we would do carrots. And then
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after those three days, if we saw that that didn't bother him, then
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we could okay, he can have carrots. So we went through all different
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kinds of foods like that for like almost a fresh year. And for his
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fresh year he didn't eat meat because we were just scared. We just gave
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him greens, all vegetables, potatoes, all things like that because we just,
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I don't know, we were just so scared we didn't want to give
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him anything other than vegetables. So he ate really clean for the first year,
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like when we turned well, when he turned about one, he was
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eating only vegetables. For well, probably it's about two. He was eating
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only vegetables and then my mom mentioned to me, he probably needs to eat
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more than just vegetables. So we started, you know, giving him again.
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We'll start back. We'll do like chicken three days in a row.
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If the chicken didn't bother him, that we would move to something else.
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But one thing that we don't give him is pork. And if he does
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eat beef, it might be a hot dog, but most of the time
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we do turkey, hot dogs, turkey burger. You know, we keep
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him away from things that might cause him to be constipated. We did learn
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that beef it's constipating, like it's he's not constipating, it's slow. It
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takes a time for a body to digest it. So with him, the
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doctor did tell us that if he wasn't pooping, if it's poop stayed in
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the stomach too long, that it could cause inner colitis and that so that
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way, we were scared to give him beef because it was like, if
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it takes too long for it to process to go through his body, it
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might sit there too long, and we don't want him to get in a
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colitis and the intercolitis is an affection in the colon. They did say that
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they don't know why that happens to a lot of hirshbrung kids or people who
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have Hirshwrong's disease. They said, it just happens. And sometimes in our
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case, Marcus has never had that. He never had he's never had an
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colitis. We honestly never have had to go back to the hospital for anything
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major. The times we did travel going back to Roanoke was because of our
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own uh probably like me and his dad, we were scared. So if
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we didn't know, if we thought something was wrong, we would just drive
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to the and we don't live close, we don't live close to that hospital,
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but we would drive ours to that hospital because we knew that that hospital
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took care of him before, and we knew that they knew how to handle.
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The hospital where we are not so much. They didn't know much about
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it. So we would always drive to where we knew where to go,
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you know, who could take care of him. And every time we went
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it was nothing major. I guess they thought that we were these crazy parents,
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but every time we went, they were like, no, he's fine,
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a little bit. He was a little impacted one time, but they
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gave him something and taught us what to give him at home to keep him,
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you know, going pretty good, but uh, that was it was
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just an experience. And in our household, poop is like like nothing.
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I mean it's like some people might not like to talk about poop, but
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here, everybody in my family, everybody that's around us, they know poop
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is like talking about ice cream. I mean, it's not the same.
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But it's no big deal to talk about poop in our house because it's like
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it's a big deal because he has the poop, and if he does not
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poop, then he's going to be sick. I mean, any of us
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would be sick, but in his case it would be more severe because of
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his Hirshboon's disease. And so after all of that getting his food and stuff
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right now we know exactly what he can eat and what he can eat.
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Now that he's older, getting ready to be seven, he kind of has
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a mind of his own, so he likes what he likes even though he's
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not supposed to have it. So we've gotten to where we know the things
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that he's not supposed to have if he has a little bit of it,
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Like he can't eat a lot of sweets, so if he has a little
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bit of sweets, it doesn't bother him. But if he has too much,
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in which we don't know what too much is. We just kind of
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got a feel of what he can and can't have, you know, from
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over the years. But if he eats something too much of candy or too
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or if he sneaks a piece too much candy or something, then I know
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because the same thing happens every time his poop is full of acid, and
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even though he's this age, the same thing happens. So we try to
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keep on watch on what he can and can't eat. What he can and
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can't. Drink a lot of juices, too much sugar, so anything with
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too much sugar a lot of times will mix his juice and water together to
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kind of dilute it. So he can't have dairy, he can't have too
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many sweets, he can't have acidic like pizza sauce. So we do alfred
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O basau our pizza for him, and we do put He's on the pizza.
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But we do like light cheese. So we kind of got a kind
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of got it all together what he can and can have. But you know,
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overall, his life has been pretty good other than as long as he
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stays away from what he doesn't need, then he's pretty good. It's just
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like any other normal child. But other than that, we have those times
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where he has the problems with his pood being a city. And other than
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that, he also has and and I know a lot of other hirshbrongs kids
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might have this too. He'll have like accidents sometimes and now he's not incontinent,
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but sometimes I believe, well, the way his surgeon mentioned to me
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is that when he did his surgery that he couldn't take all of the hirshbrongs
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part off because if he would have, it would have took away his sense
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of knowing when to go to the bathroom. So he said he did leave
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a small amount for those purposes. So now and I can even see it
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when he goes to the bathrooms or he doesn't go. If he has an
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accident on hisself, it's not because he pooped on hisself. It's to me,
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it's almost like he poop got stuck in that spot where the nerves are
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not there, so and sometimes I think it just comes out on his own.
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So that's another thing that we deal with a lot of too, which
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is it's a big struggle. I mean, I'm sure any our case is
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probably not as bad as other people's case, I'm sure, but for him
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and for us sometimes it's frustrating, and you know, we just have to
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think, this is what he was born with, and this is what we
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have to deal with, and we have to make the best out of it.
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So we're making the best of what we have. You know, we
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love him, he's you know, he's a special little boy to us,
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you know, so we're just thankful that things turn out the way they'd be
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it because if they didn't, then he might not be here. Because they
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called it when he was like three days old. So it's been cases where
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they didn't catch it till or they didn't catch it at all and the child
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passed away. So we're thankful. Yeah, definitely, thank you very much
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for telling that that story. And one part that I'd pick up on.
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You said that you go to a hospital's that's very far away because it's specialists,
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and I can I can definitely relate to that because my hospital that I
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went to was in London and I live in in Suffolk, so that would
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be sort of two hours away the hospital. Because it was a specialist hospital,
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I couldn't just go to my local, you know, GP down the
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road. I had to go to the specialist hospital. And whenever I had
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that, then I had to have the day off school. And I'd have
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people sort of questioned, say, well, why why are you having the
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day off school if you know you're just doing a hospital appointment. And I
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just found it really difficult to explain, well, actually I'm a bit different
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and I'm special in a way, and that that was That was a tricky
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one. And another point the food. Thank you so much for explaining that,
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but the the trial and error the beans or the meat or and it
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was it was three days. Was there any sort of specific reason that it
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was three days each time? I honestly don't know for sure. I just
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follow what the doctor suggested. So I'm guessing maybe after three days it'll it
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gives it time to work its way through your body, and if there's going
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to be any effects, then then your body will let you know after three
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days, definitely. And another point you said as well about about being really
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positive, because again, all this this podcast is around a lot of positivity
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and about sort of achieving what you want to and not letting Hirshbrungs stand in
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your way. Are there any other examples of Marcus achieving things and not letting
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Hirshbrungs stand in his way at all? M hm. He when we have
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him in Take one though class and he loves that class. He loves to
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fight and do things like that with the class. So he does that.
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We haven't well, he's at the age right now at his school they don't
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have after school activities as far as sports, but we're looking to get him
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into playing baseball for his age because he loves baseball as well. But going
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places with his cousins, you know, he goes and does things like any
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other normal child. The only thing me being his mom. Now that he's
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gotten older, I'm not as bad. But when he was a little bit
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younger, he should be old enough to go with people. But I would
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just be nervous, you know, for him having to take his backpack with
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him, you know, just in case he would have accidents, and then
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and to getting my family to understand how serious it was and how often they
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needed to check on him and things like that. So those were things that
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I would worry about. But no, he he does right now. He's
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just in Take one Doo class and he enjoys that. Other than that,
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if they have activities after school at his school for the kids, he attends
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those. So it's nothing that's really holding him back. If any if anything
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is holding him back, well, in the past, it would be me
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because I was like, well no, because and then I had family members
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telling me, well, you can't, you can't baby him. You have
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to let him, you know, be like another child. He wants to
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play, he wants to go to birthday parties and things like that. So
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I've learned to get I've gotten better over the years to allow him to be
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himself and then and I've also taught him exactly what he needs to do to
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take care of himself when he isn't away from me. So as far as
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going to school, he goes to school, going to kindergarten last year,
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I just I was dreading for him to start school because I just didn't want
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my baby to go to school and I'm not there to help him. But
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I prepared him because when he went to kindergarten, he knew exactly what to
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do. He knows exactly what to do now, so he's good, fantastic.
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I think having spoken to a lot of parents, on the podcast and
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off the podcasts, and spoken to my own parents about this as well.
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I think that comes up a lot that parents get very worried if you have
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a child with a long term illness. You think how they survive in this
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situation? How will they survive without me? And one thing that I have
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seen is that a lot of children are very very resilient, very resilient,
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and very self aware as well, and know a lot more than we think
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they know. Yeah, and I think sometimes it's that that really sort of
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worrying is completely and utterly normal. You said that as well, or Marcus
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said that he doesn't know anybody with with hirsh Sprung's disease, And now you've
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met me as the first person with her shrugs. But has there been certainly
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from a sort of medical point of view, when you've gone to the doctors,
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have they been been able to give you more examples of people having hirshbrng's
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disease and what life might be like in the future, or has it been
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sort of a trial and error process. So as far as meeting people know,
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we haven't, well the doctor they wouldn't you know, tell us if
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other people had or meet or get us to meet up. But as far
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as him like in the future, the surgeon said that it's you know,
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every case is different. So he said, as he got older, he
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might would know how to just I guess since in his body more so if
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he if he was to have a getting ready to have an accident, he
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would know. Like like now he's seven, A lot of times I think
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he just wants to play and he probably knows, but he'll just play instead
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of go to the bathroom. So as he gets older, he said that
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he would just hopefully just know how to control them all. I just don't
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learn his body more that he would know. But as far as him not
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having the same problems, he said, sometimes it might get to the point
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where he can have so much control over himself that he might not have accidents
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anymore. So that's what we're hoping and praying for. But he said there
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isn't no there's no cure forward or anything like that. So we're just hoping
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from praying for the bass as he gets older. Yeah, definitely, definitely,
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yeah. No, is a long term long term illness is a management.
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It is a management and as you say, each case is different,
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so there's nobody, you know, especially not me or anybody can tell you
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any medical advice and say this will happen in the future, this will happen
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in the future. Again, I mean, it would be great if somebody
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sat down, wrote a book and said, right when you're seven, this
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happens. When you're eight, this happens when you're nine, this happens.
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But unfortunately it just isn't like that, And and you sort of go day
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by day, week by week, month by month, year by year and
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see, you know how it goes. He said that Marcus was into baseball.
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Does he have a favorite baseball player? Yeah, no, he hasn't.
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No, he likes to play and hit the ball, but he doesn't
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actually watch baseball. And he does he really does a great job to be
22:12
his age as far as hitting the ball. So that's why we're hoping to
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get him to play so he can get more into it. Fantastic And is
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it just baseball that he's into or is there any other and taekwondo obviously,
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any other sports that he likes at all? Not. I mean, he
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likes to go to basketball games when we go, but he hasn't really said
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he wants a basketball or anything like that, or football. It's just been
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mostly baseball or him going to taekwondo class. Fantastic, fantastic And really finally
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from me, I know we've we've just talked a little bit about the future
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is very much kind of that. It's not a complete road map of of
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sort of a linear proportion. But where do you see the future going as
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far as Marcus, what do you think he would be doing in the future.
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I honestly thinks he's going to be like a big deal because he I
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mean, for me to say that is it might sound a little weird,
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but my son, he's just not like a normal seven year old. I
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mean he I don't know if it's because he's around older people a lot,
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but he just knows a lot. He's very smart and some of the things
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that come out of his mouth I wouldn't even I didn't even know that he
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knew how to say it or or have a conversation like he has a conversation
23:45
so well. He said, he says that he wants to be a scientist
23:49
and he loves that. In his school they have stem class, so I
23:55
mean steam steam class, and that's their science class. And he loves that
23:59
class. So he's he's saying that he's going to be a scientist, and
24:02
I if it's not a scientist, it's going to be something because the little
24:06
boy, he's different. He is really really different. Yeah. Must have
24:10
been around doctors and hospitals, so they must have an excellent stuff. Yeah,
24:15
yeah, so yeah, he I don't know. Sometimes I just don't
24:19
know what to say. But he just makes me laugh because of some of
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the stuff that he says. I'm just sometimes he has me speech toless fantastic
24:29
and where can where can people find you if they want to go more?
24:37
My Instagram is hair Byloquita and my Facebook is uh Liquita Williamson. And also
24:48
I wanted to speak about a cream that my husband came up with too.
24:55
Well at the time we didn't know, but you know, we're very spiritual,
25:00
so I just say it was a gift from God because there's no way
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that somebody would just well my husband would just think of this, you know.
25:10
And so when let me go back, so when when Marcus was a
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baby, we were trying all different types of creams from out the store to
25:22
like diaper rash creams and things like that. To help heal his bottom up,
25:26
and we couldn't find everything that we used. It just was just too
25:33
like water based, or it would just melt off. I guess it was
25:36
because his poop was just so full of acids. It's just unexplainable how his
25:41
bottom and his skin would be melted off of him. But my husband come
25:48
up with a cream, and at the time, we just used it for
25:52
our son. But as time went on and I joined a Facebook group with
25:56
Hirschbrong moms and dads and they would talk about their kids and all the problems
26:03
of their heaven and if anyone knew anything that could help their children. It
26:07
just touched my heart and I was and I talked to my husband. I
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said, this cream that you created is is I honestly don't think it's just
26:15
for our son, I said, because it's just like, how could you
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think of this? And the way we believe is that you know, God
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gives us things to put out on earth to help others. So what we
26:32
did was we we named the product after our son. Our son's middle name
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is Legend, so the name of the cream is Legend's Choice because it is
26:45
his choice is what helps him every time he has problems with his his poop,
26:51
the accid and his poop, and we've been using that and we've been
26:56
telling others about it so that it can help their children as well. We
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have a website the that people can purchase the cream off of if they want,
27:07
and the website is ww dot w Legends Choice dot net. You can
27:15
go they can go on that website. And the cream is just not for
27:21
really bad diaper rash, but it can be used for any open wounds on
27:26
the skin. It's just it's honestly a miracle cream. It stops the pain
27:33
that you're feeling in that spot at the time. Now, I do want
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to say, just like in Marcus's situation, so if we use the cream
27:41
on him, it does help soothe it. It does comfort him. He
27:47
said that the pain does stop. But if he keeps pooping, of course
27:52
it's gonna you know, keep affecting his skin. But the cream does.
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It's a thick cream, so it stays on and the sores so it helps
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to also code it code the open sores on his skin. So I do
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want to put that out there for anyone who is looking for something, because
28:12
it's all about since I've experienced this and other parents in the same situation as
28:18
us, and sometimes you just don't know what to try, and tried everything,
28:23
and this has worked for us, and I'm sure it can work for
28:26
others. So if anyone is interested, go check Legends Choice out and get
28:33
you a bottle. And I hope it blesses your child, just like it
28:36
has helped us in our family. Fantastic and this and this was just something
28:41
that Marcus came up with just just on his own, just took playing around
28:45
with different kareams and stuff well, with different ingredients and ingredients, and then
28:53
we just tried it on him and we were amazed. I was just like
28:59
how and the world? And now we use it on everything, like we
29:03
almost use it as if it's a nero sporn. If somebody gets a scratched,
29:06
that'll call it my family. Something happens, somebody has a sore,
29:10
or if somebody has anything, somebody's animal has a sore, has a scratch
29:15
or something a bug bit an animal a bug bit us, We'll put it
29:19
on there and it does the same, so it's good for any open wounds.
29:25
I've used some on my grandma, who's an older lady who sometimes,
29:30
you know, it's older people. They don't know how to not scratch sowres
29:37
and things like that. So we've used it on her and it has helped
29:41
her leaves to leave her sores alone. So it has really been a miracle
29:48
cream for us. Fantastic, No, that sounds absolutely brilliant. Well,
29:52
thank you ever so much for joining me this evening, and I wish you
29:57
all the best for the future. Thank you, and thank you again for
30:00
having us and I can't wait to hear more of your podcasts. Thank you,
30:07
thank you so much. Thank you.