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In our previous episode, we discussed newborn screening and advancements. In this episode, we want to focus on the life experiences of Sheri Wise, an affected adult with a later diagnosis and how she has approaches life's hurdles. Interviewed by Jason Madison, who is also an adult with MPS.
We explore the unique lives and work of our community's leaders, professionals, and inspirational members--conversations about the challenges, courage, and dedication that are pillars of this community. We share new perspectives, insights, and knowledge about the rare disease that impacts our daily lives and guides our individual journeys.
The National MPS Society exists to cure, support and advocate for MPS and ML.
Jason: [00:00:00] hello, my name is Jason Madison, and I would like to welcome you to this month's episode of the National NPS Societies Our Voices Podcast.
The end of the month of September brings to a close newborn screening awareness. In our last episode at the start of the month, my co-host Stephanie Cozi, spoke with Dr. Mike who about newborn screening [00:01:00] advocacy on a federal and state level. Mike shared with us his experience with newborn screening as an advocate researcher and as a parent of a child with MP two Hunter syndrome.
Today we'll be doing something a little different, having a conversation about life experiences of affected adults who did not have newborn screening and had later diagnosis. We'll also share our thoughts and hopes on how newborn screening and scientific advancements will impact the lives of affected individuals who have come after us as an.
Adult with nps. This episode, I will be talking having more of a conversation and less of an interview with my comrade in arms. In this MP fight is my honor and privilege to introduce the fellow member of the National NPS Society's Adult Resource Committee and a current member of the Society's Board of Directors, Sherry Wise.
Hello, Sherry. How you doing?
Sheri Wise: I'm doing great. Jason, how are you?
Jason: Oh I'm hanging in there. Do you remember exactly when we first met Sherry?
Sheri Wise: I would have. [00:02:00] Started going to, I think my first conference was in Salt Lake City in 2015. Okay. So it's been a day or two. Yeah.
Jason: Just , I don't even remember what year that was.
That, that was a while ago. But one thing I do remember when I first met you was like, Oh, my Sherry's charming and funny. She's fun to talk. So I thought it was just great fun to have someone with such a great sense of humor and in the insight, to be a part of, this adult community.
And you became shortly part of the adult resource committee afterwards, correct. Correct. Correct. And then now you're on the board of directors, right?
Sheri Wise: Yeah. I just finishing up my second term on the board of
Jason: directors. All right. And how's that been going
Sheri Wise: for you? Oh, I love it. I love helping people.
I love being involved being backstage, I guess you could say. It's really. It's eye opening how everything with the society fits together at a giant machine to get all of the work that we do get done.
Jason: Yeah. It's a [00:03:00] lot of fun. I There's a lot of work going into it. Cause I remember when I was on the board of directors just being like, Wow, there's a lot more to this.
And a lot of people realized, but it really does give you a sense of purpose. It really does, and for as an adult an affected adult, it does give me, it always gave me a sense of making progress, doing something. So I'm not just waiting on the side and waiting for something to happen.
I'm not sure if you have the same feeling.
Sheri Wise: Oh, I do. A hundred percent. It's a great feeling to be involved in the process. Yeah.
Jason: I just wanted to talk really quickly, about how our diagnose app, and I know I brought up earlier how newborn screening is becoming widely popular. Most states there's still a few left, but a lot of states are really moving along with doing a newborn screening and a lot of patients have been Diagnosed earlier in life so they can start treatments earlier.
I know a lot of people our age who have gotten diagnosed, found out later or have been misdiagnosed, might not have gotten proper [00:04:00] diagnosis for years afterwards. I personally in some ways was fortunate cuz I have a long family history of something going on and. My uncle back in the sixties was diagnosed by Des Shriner's Hospital, and they're like, We think it's hunters.
And then my mom, when she saw the stuff coming along, attributes that she saw in her uncle and her brother, that's when we got clinically diagnosed. So for us it was a little easier than other families. What was the diagnosis experience with you?
Sheri Wise: It's, I didn't, I'm the only one.
NPS four in my entire family. Okay. And so I was born in 1980. When I was two, my mom noticed that I had some curvature of my back. And so they did some testing and basically I was misdiagnosed until I was six. And then we did the urine and skin sample test and it was determined. I do have NPS for a, [00:05:00] and they, there was just not much information back then.
This was before the internet. No, Google, which is probably a good thing that my mom couldn't Google what it was. Oh boy. But they basically said, here's what she has. Be careful with her neck and don't let her do any crazy stuff and have a good day.
Jason: Knowing you, Sherry, I don't think you've quite followed that advice, but No.
Sheri Wise: I took it as a personal challenge. Yeah,
Jason: there you go. And that was way before infusion. So what was that like for you living with this diagnosis that just was basically, I hate to say it like this, but at that sentence or,
Sheri Wise: Actually getting diagnosed with NPS four A, it wasn't there wasn't a lot of information, so the diagnosis they gave me earlier, they told my parents I would live to six, maybe 10. And so whenever I turned six and I wasn't exhibiting all the symptoms that they thought I should, that's when they did the other testing and determined that they were wrong.
And But other than that, there really wasn't a lot of [00:06:00] information for my parents to go by. So I didn't have the annual testing, the cardio, the pulmonology. I didn't have any surgeries, major surgeries. I did have leg straightening surgery at Shriner's Hospital in St.
Louis when I was eight, but that was the only thing I did because we weren't told any differently.
Jason: for me, I went through a lot of childhood things like you were saying, but then it got to a point when I got older and there were no treatment options for the actual disorder, just from the symptoms that I either subconsciously or sub, just went through this devil made care attitude and just thrust myself into living as much life as I could. Cause I think in the back of my head, I had a certain sense of doom. Did you have a similar experience to that, or what was your thought before you became aware of like the infusions?
The e r.
Sheri Wise: To some extent, yes. I grew up on a farm in rural Oklahoma. . So you know what my younger sisters did? I did. We maybe had to do it in a little different way, but [00:07:00] I rode horses. We went to the lake, we did all the things that the doctors said don't do, because my parents were very good about not putting me in a bubble, but at the same time, they would have to keep me tethered back a little bit because I always wanted to go and do what everyone else was doing.
Some of those things were dangerous for me, so it was a fine line to walk. I went to the University of Oklahoma, went to college, so going from a class of 34 students to, ou Wow. That was a major culture shock, but I actually loved it because I had. I was anonymous. Where I grew up. Everyone knew everything about you and you couldn't get away with anything either. , I'm sure you
Jason: tried .
Sheri Wise: Oh yeah. So going to college, that was an eye waking experience and it was great. I loved it. And then, after college, I got a job. And I couldn't really find a full-time job because everyone looked at me and thought, Oh, insurance is gonna be [00:08:00] astronomical with this person.
And at the time, I didn't go to the doctor ever for anything. I wasn't sick and I didn't have to have the surgeries. So I was working three part-time jobs at one. Yeah. And then finally I heard about some mystery treatment on some random Facebook group that no one could really talk about. Back in 2013.
So contacted them, got some information about the mn infusion from BioMarin. See,
Jason: usually you have to be wary of mysterious Facebook
Sheri Wise: groups. Oh, yeah. I was cautious. I stuck my toe when the water to see if anything grabbed and that no, we got a lot of information and so MN was improved Valentine's Day of 2014 and I started my infusion that October.
Oh,
Jason: happy Valentine's
Sheri Wise: Day. Yeah. Very present.
Jason: Yeah, I had I also had a very similar experience. My, where I grew up was small, not quite as small [00:09:00] as Oklahoma where you are. But It was small and then I went to a big university. But there's a time from childhood where I just was healthy enough that I didn't ever go to the doctors and I just didn't do it.
And I just plowed ahead with whatever life I was doing. But then when I heard about the infusion, that kind of changed everything for me. I had that weird Whoa, no. Wow. There's some way I. Actually treat This is, mind blowing to me at the time. Yeah. Do you remember your first thoughts when you got that first infusion?
What that was like for you, or,
Sheri Wise: It was scary. Because they've gone through a lot of trials and everything, so I wasn't worried about, is this gonna hurt me? But Right. At the same time, it's a life changing event because you don't know how you are going to react to it. Yeah. And obviously, I'm three feet too.
I'm not gonna, apply for the W N B A or anything I had spent, 30 some years living as me. How is this going to change my. Wow. [00:10:00] And so it, I also going through all of the testing I had to have done for baselines beforehand. , the ekg, the MRIs, the pulmonary function test, that opened my eyes to a lot of things that I really should have been paying attention to growing up.
Yeah. And a lot of things that could have gone wrong, but luckily didn't. . So it put that. Invincibility cape that we all try to wear back in the closet, and it made you really question your mortality a little bit. ,
Jason: it certainly does, but it also gives you hope. Oh yeah. It gave me hope that, oh, my quality of life will be better.
There's a lot more adults. Coming out and being more involved. And I think a lot of that is because their health has been increased with these infusions. I, yeah, I mean I think that directly led both of us to take such a part within MPS society.
Just got us involved in it cuz oh, there was actually something we can do [00:11:00] now. But I know when I, all of a sudden, Conscious of my health. I just had to start going to the doctors and I ran into a lot of problems moving from pediatrics to adult medical care. I'm not sure if you had the same experience yourself.
Sheri Wise: Yes, because all my pdf, I didn't really go to any specialists growing up because we weren't told. These would be issues. . And so I just had a general doctor, the physician that I saw offered, flu and whatnot. Yeah. And then just, annual checkups and stuff just like any other person in the world would get.
And then once I started needing to go to these specialists, I was running into a lot of brick walls because, I'm an adult. And NPS is generally treated as a pediatric disorder. And so all of the specialists I need to see are at the children's hospital. Yeah. And so there was a lot [00:12:00] of hurdles.
I had to I didn't jump them. I went under them , but
Jason: But you got through 'em regard regardless, yes.
Sheri Wise: There are a lot of hurdles I had to deal with to get to the doctors I needed to see. Yeah.
Jason: Did you have any issues with any insurance problems or anything like that, or,
Sheri Wise: No, I work for the municipal government in Oklahoma City.
Okay. Okay. And so I've got, good insurance there, so I didn't have to deal with that, but I'm going to be taking early medical retirement after the beginning of the year. and so transitioning from my employer's insurance to something else when that happens, so I can go on S D I. That is, that's becoming a challenge.
Jason: ,
it's difficult. Um, There, there are people that you can talk to. I. With the NPS decided to help you out. But that getting on S D I took me about three years to do myself. But yeah, I totally understand. I was actually at the Children's Hospital of Philadelphia [00:13:00] yesterday for checkup because pretty much the only geneticist in Pennsylvania who prescribed my ERT was there.
And every time I go there, I get the weirdest looks from people because, I'm 46 years old, Even right when I got to, got into the cab to take me there, the cab driver goes, Oh, you're going to chop. I go, Yep. Goes, Oh, you're got another person coming. Got a little one. No, it was me.
Yeah. So Oh. Oh, okay. And I tried to explain a little bit, but so many times you go up to the front desk like, Oh, okay, who's your kid? No, it's just me. And they give you this weird, like slightly suspicious look. It's no I'm legit. I totally know that experience and I, I.
There are, and a lot of the adult doctors just that I do see, they're all learning this, they, they run back, and are flipping through Google or whatever resources they have. And I've had other doctors go, Wow, it's privilege seeing you cause I've only read about you in the books. I get that a lot.
[00:14:00] Yeah. So I was like thank you. I guess I'm famous. Does that mean I get like an extra gummy eraser treat as I'm leaving or something? I don't know. That'd be great. But yeah I get that experience a lot.
Sheri Wise: Yeah. I hate it when we get new doctors, because then you have to teach them all about yourself all over again, and then they're trying to apply the knowledge that they have.
It's it's not going to fit. This is a square peg in a round hole, it's not going to work. Trust me, I know me better than you will
Jason: ever know me. Yeah, and that's one thing that as adults, when you start, have to, you don't always have your parent as an advocate there with you. You have to stand up to these doctors sometimes.
Because like you said, you know you much better than they do, especially when you're having to reintroduce yourself to these people. I have a little bit of an elevator pitch that I go through about all the stuff that you have to repeat. Cause I've done it so often with different doctors, but, and I'm sure you've had times where you've really had to shut down a doctor and it's no,
Sheri Wise: no.
Yeah, I went to a [00:15:00] neurologist a couple years ago because I was having headaches. Okay. And I was afraid it was spinal stenosis. . And so they did a full body MRI to see if there was anything going on. And I do have some stenosis, but it's not bad enough. Went in there and asked him, What did you find on the mri?
And he said I can put a plate in the back of your skull that connects to your spine. You won't be able to turn your head, but that shouldn't be that big of a deal, . He said I said, I work a full time, 40 hour a week job. I drive a car, I have to be able to turn my head. Oh, you knew hell. And then he is having me pull up pictures of, how I drive my, you.
Minivan. And then he goes, he jumps completely from my neck issue to Have you seen your hips? I said, Yes, I. I'm very familiar with my hips. I'm very attached to them. Yes, I know. They're in horrible shape and there's nothing we can do about them. I'm here about my neck. He's yeah, we confuse your neck.
That's not a problem. I'm sure I can figure that out, but have you seen your hips? I said, Okay. Per basically what hips there, There's nothing much left [00:16:00] there. But don't tell me you're. Fuse my spine and you'll figure it out when you get in there. , you're not touching me. No, we're not. I'm not your Guinea pig.
I'm sorry. Yeah, it's like
Jason: some old school mechanic who's just trying to fix his car, like in his garage, you don't want that,
Sheri Wise: huh? Nope. I don't want him looking for that 10 millimeter socket while he is in there Tinkering. Yeah. .
Jason: I'm glad that you had the wherewithal to say no because Yeah, you have to be really careful.
I had to go to several doctors for my spinal thing until I found one that was willing to at least provide a certain level of flexibility for me to turn my head. Along with these challenges, you also brought up, like how you're driving and these are all things that you have to figure out as we're becoming adults, or I guess you and me are long time adults becoming senior adults.
Did you have difficulties? Learning to live independently. I know you drive your car. Was that difficult for you to find the appropriate stuff you [00:17:00] needed to make the car, make that a viable option for you or,
Sheri Wise: Yeah, it was a challenge because once again, this was long ago, so you know, I thought my driver's permit in 1995, so it was hard.
You couldn't really do much internet research back then.
Jason: I know you had the kids start to model T at that age. Oh my goodness. Yeah, I know. It
Sheri Wise: was so long ago. Dos prompt on the windows. It was bad. No, my, my dad found pedal extensions at a handicap age store about an hour and a half away from our house in the city.
And so we got down here and. They showed us how to put them on because we didn't have my car yet. . So they showed us how to put 'em on and how to adjust them and all. And they paid, they wanted $500 for them. And we're farmers, we don't grow money, we grow cows, which we weren't getting paid a lot of money for cows back then.
We got home and dad put 'em on. And [00:18:00] I had this old 1988 Ford tourist that it was on its last legs when I got it and I completely ran it into this dirt . It was a great car. I loved it. But it was sad because since it was a specialty, Equipment, modification for a car, they could charge $500 for something that my dad could have made himself.
Yeah. Just from scraps we had laying around the shop and I felt that was really sad, but I'm still using those exact same pedals today. Really?
Jason: Yes. So I guess so. You might have been felt at one time. They're taking advantage of this situation. You're still doing it, ?
Sheri Wise: Yeah. The quality is good. There there's not much to them.
It's pretty much a clamp with a metal stick and the pedal tread on the top. , there've been some modifications for different cars. But it's I guess you could say they've earned their keep,
Jason: I guess so. . , and I [00:19:00] know those are all just part of the challenges, but Then you don't live with your parents now, right?
Correct. So I do know you do have a boyfriend. Yes, Correct. And he lives with you right now? Yes.
Sheri Wise: Yeah. We've been together for about three years.
Jason: did you have problems before that? Just like finding relation? I, I think he's great at, by the way, when I met him, he was like, Oh boy.
Boy, you're lucky you got Sherry. And he played board games. It's pretty awesome. He's a swell fella. But did you have any difficulties before that, like with relationships
Sheri Wise: Basically I had to do the online dating thing because just meeting someone in person without knowing, them beforehand or them knowing me, it's, that's, I'm a shock when I walk into the room.
. So it's not like I could just go out somewhere and, meet someone. And so yeah, that's Which online dating can be very scary too.
Jason: Can be Before that you, you lived by yourself independently, Correct. Or did you have a roommate or,
Sheri Wise: I was actually, after college, I lived by my own, on my own for a while.
. And then I had an elderly [00:20:00] family member that she needed some help getting Okay. Around town. She wouldn't, couldn't drive anymore. And so I moved in with her and stayed with her for about seven years. Okay. And then I. Actually got married after that. And you did well you got married. Yes, I was married.
Jason: You knew, I never knew you were married. Sherry, what secrets have you been keeping from me?
Sheri Wise: Not that many.
Jason: Wow. Wow.
Sheri Wise: Yeah, but I was married for about four and a half years. He passed away in a car accident and then, Oh, I'm single. Sorry,
Jason: Sherry. No, it's okay.
Sheri Wise: , then after that I was single and Okay. And eventually met Eric.
But yeah, it's It's been interesting. There's been some curve balls.
Jason: Wow. I guess so. Wow. I'm a little in shock. .
Sheri Wise: I thought you knew
Jason: that. No, I didn't. Oh boy. Oh, maybe you told me one, one night after at the bar or something. I just kinda forgot, but, I also had a lot of difficulties and, finding [00:21:00] relationships and, I've, I actually had, I guess most luck doing things online as well cuz that gives you a chance to get to know or have the person get to know you first.
It is difficult and there's a always a strong sense of, it's frustrating because you see all your friends and other people around you just seems so easy, even though I know it's not right. Ah, what's wrong with me? We just have creeps
Sheri Wise: up. We have extra challenges that we have to work with that the average person doesn't have to consider.
Yeah. So we have to let people know us for us. Without, the physical limitations. And that's sometimes that is something that people can't overlook. Yeah.
Jason: [00:22:00] So it can be frustrating. Yeah, I know. And but do you have any words of advice or just not even advice, just thoughts to those who might be younger and really frustrated?
Cause that's when it seems to hit hardest. When you're younger and you have difficulty at least it wasn't my situation. And I'm sure some of our listeners might have similar thoughts. Was there [00:23:00] anything that you can, you think would be helpful to hear?
Sheri Wise: From a relationship standpoint, don't give up.
Don't ever think that you're not worth it because you. If you haven't found the right person yet, you just have to keep looking. But don't settle, Don't go into a relationship just for the sake of being in a relationship. Yeah. You need to find your match. . And sometimes they're really hard to find.
But,
Jason: And don't be afraid like firing a doctor, you know you more than the other person. Don't let somebody else steamroll you if it just doesn't feel right.
Sheri Wise: Don't let them make you into. Paper, they're gonna publish just because they want that.
Jason: Yeah. Or that, that version of you or feeling like they can control a person.
And all that. Yeah. That's something I had to learn myself.
Sheri Wise: But yeah, you need to keep your best interests form most in your eyes because the doctors don't. Yeah. Not always. Sometimes you'll find a gym. I have a gym and my geneticist, she will do anything. And [00:24:00] I love her to death, but she's the only geneticist in Oklahoma and I've told her that she is not allowed to leave ever
Jason: Yep. I didn't even know you lived with a senior member of your family and that goes into something that we also have to consider of like being caretakers to our caretakers.
Sheri Wise: Yeah. That was a unique situation. We helped each other. Right. She did a lot of the housework and she loved to cook, so I absolutely let her do that. But then, but she didn't have a car anymore, doctor's appointments, grocery shopping, just going out to see friends.
I, I was her show fur, which some of her older friends thought that was just the coolest thing in the world. That she was getting driven around by someone my size, but , it was. It was a great experience. I wouldn't trade that for anything because not many people get that opportunity. . Oh, that is pretty
Jason: cool.
as you get older, do you think that's gonna be something that you're gonna have to think more about? Taking care of your parents as they get older, or do you think your [00:25:00] siblings will be able to help with that?
Sheri Wise: I do have two younger sisters and we're we're a close family. Okay. So it's, I don't see that being a problem, but there will come a time, I'm sure, when we do have to cross that bridge.
Yeah. And so it's gonna be strange becoming their caretakers. Instead of, that role reversal is gonna be. Something. I don't wanna really think about that right now. .
Jason: Yeah, I know that's something that kind of got you eventually and do. Do you think you've also have to worry about just setting yourself up for the future so that you are in a good spot when you get to a point where it gets more and more difficult for you to take care of yourself?
Yeah.
Sheri Wise: I think we all have to make extra preparations than just the average Joe, because we have so many other things to consider. You know who's going to make medical decisions later. Yeah. Do we have any kind of a savings insurance? what am I gonna leave for those that are behind [00:26:00] me?
Cause I don't wanna leave a big mess, yeah.
Jason: I'm having to go through a similar thing cuz for the longest time I was just a rambler just traveling all over. But now I'm getting older, I'm like, I don't have any kids or significant other and I'm the only child, I have to start thinking about being closer to family.
For that, just for the support, support that I can offer as well as support that I might need as I get older. So that becomes something that I do have. Think about and a lot of, I think adults before us didn't have to, because a lot of us didn't reach to this age. So these are issues that are hard to deal with, but in the same way, I'm grateful Oh yeah.
For that
Sheri Wise: the alternative is not
Jason: good. Yeah. And it gives us gives us the full life experience, I guess just with maybe some extra hurdles that we have to go under. Or over maybe to the side. Yeah.
Sheri Wise: You just have to prepare for the things you know that are coming. Be the best you can. And maybe sometimes you just have to take one day at a time.
Yeah. [00:27:00] And there's nothing wrong with that. No.
Jason: And I'm glad that you're taking that opportunity to retire early from work. SSDI is a great program. It's not perfect by any means, but I think that's good for you. Would you, Are you thinking of getting like a part-time job to go with that or,
Sheri Wise: It really just depends.
I wanna get the s d I ironed out . Cause I don't wanna do anything. Cause I know you can only work so many hours or make so much money a month,
Jason: make so much money. It's more than regular social security with disability. So you get more, but you can make more too. But there's certain it's a little harder to get because of that.
Sheri Wise: And then there's also, Medicare does not kick in. For two years after you take Ss d i. So that means for two years I have to pay for my own medical insurance, which that's expensive. It is. I currently have Blue Cross Blue Shield to my employer. And my insurance claims are anywhere between [00:28:00] 800,000 and a million dollars Every.
Yeah. So finding something that's going to cover my weekly infusions. Yeah that's gonna be another challenge that I'm gonna have to figure out how to work that.
Jason: So what I did was I lived in a state that was fairly generous, so it was New York State, so I was able to get Medicaid with disabilities in that state, you're allowed to make a little bit more, but I had to be real careful of the amount of resources I had.
And my pharmaceutical at the time was Shire. They helped me with the rest of it until the Medicare kicked in. I was able to cruise that, but that was still very difficult to get. And like you're saying, you're just sitting around limbo for three, three years for this all to get hammered out.
So it's, it. It's a difficult process, and when it doesn't feel like you have any help and you're doing it by yourself, it's really can be very discouraging at times. So even just getting a state Medicaid, there was one day, I remember [00:29:00] spending entire day going to between four different offices in New York City because each office said, Oh, you have to go.
So I'd go there and it's No, you gotta go there. So I'd go there all day till finally I had to scream at someone at what is it the hospital in New York City. And finally oh, okay. Sorry about that. We know what's going on. It's ah, all day. Didn't even have time to stop, to get a slice of pizza.
Grab like a grab a hot dog from the street. But yeah, no I, that's. Difficult, but it's something worth doing cuz once you're in it, it does provide at least a sense of stability so you can concentrate on the other things that you need to help take care of in life. So do you think now with newborn screening and the kids, getting these infusions a lot sooner, how do you think that will affect their journey going forward?
That was different than ours.
Sheri Wise: Oh, I'm hoping it's gonna make it a thousand times better. Yeah. Just because with newborn [00:30:00] screening, you're gonna catch things right away. Yeah. And if there's a treatment for it, you can start it right away. And you're gonna be able to get on different programs that can help you.
Cause if you're gonna have, lots of medical treatment if you're gonna need modifications to your home. Yeah. The earlier you can find these things and start them, the better. Yeah.
Jason: And you might be able to start the process of getting state. Aid or finding insurance options when you don't need it quite as much when you're younger.
So it'll be in place when you start making that transition. Cause some kids might be on their parents' insurance plans, but maybe once everything's in place, cuz it started earlier, the transition will be easier for
Sheri Wise: them. And sometimes you, you're gonna need your. IEPs from school. . And so if you've got the documentation that this is from birth and everything else, that's gonna help ease that transition as well.
Jason: I also think the health will be a a lot easier, [00:31:00] if you catch these things earlier, I think the overall, it's not a cure by any means, but I think it will help them just live. Less, less painful lives, Maybe ? I don't know. Everybody's journey is different and I'm hoping that the work that we have done helps educate doctors, helps educate people so that the kids coming up after us don't Have to go through the same thing.
Sheri Wise: Exactly. We've already plowed this road, you and I. Yeah. Yeah. So don't let the ones behind us have to do the same thing. Yeah. Learn from our successes, learn from our mistakes, help let us all help each other. And I've learned a lot
Jason: from the people who came before us. All the other people that were involved in clinical trials.
And that's another thing that's going on is I know the FDA is because for the longest time, any clinical trial had to be an attenuated adult. So they could, just for whatever reason explain, but that cuts off so much of the population. [00:32:00] Cause there aren't that many of us, or an adult that can do that because we didn't reach that age to be able to.
And I do know that they've started doing f FDAs approved trials for kids is what was it? As old as four months old now? I
Sheri Wise: think I heard four months. Yeah. And those younger kids are the ones that are going to see the most benefit because there's gonna be less, Irreversible damage done to the bodies.
But do you,
Jason: do you think there's a concern for the parents because these children aren't able to make that decision? Do you think that would be an added concern for the parents? Cause some of these are very untested treatments.
Sheri Wise: Of course, it's a fine line to walk. You want to put your child through a medical trial that could save their life and you know those after them.
, but at the same time, it's a trial, so you really don't have any. And if
Jason: it works, yeah. They're getting it like at a super young age where, I went through a clinical trial and there was only so much benefit it could [00:33:00] have accomplished.
Even if it was like a grand slam. But it's yeah I'm glad about that. That's going on and I hope it really works well. But so I think, as we're closing this conversation is there anything that you would like to just share with other adults or parents about watching their kids grow up as they're learning to navigate in life childhood through school and college and the career and, all.
Pluses and minuses, all the joys and triumphs and sometimes crushing defeats. Just
Sheri Wise: let your kids live life. Don't put them in a bubble. Don't protect them so much that if they leave the house, they can't function. In the normal world . They're not going to bend to fit us. We're gonna have to work to fit in, out in society.
So y'all make your kids comfortable at home, that's their security. That's where they go when they need comfort, when they need [00:34:00] safety, but at the same time, don't make it so that they don't want to go to college. don't get a relationship. Don't get a job. Don't experience all the wonderful things that life has to offer.
because you're so scared of something that might not happen.
Jason: Yeah, if your kid wants to ski, they can go and ski. Yeah, I know you've had some experience
Sheri Wise: with that . I went senior trip in high school. We went to Red River, New Mexico and skiing and it's off my bucket list and I'll never do it again, but I,
There
Jason: you go.
I have seen records of that adventure and I must say it sound pretty
Sheri Wise: awesome. There were snow in places, Snow should never touch, ,
Jason: and I was actually also. Of some of the cool things that, we both have been able to do that may be related to our disorders. Like I know you've worked with a lot of makeup artists.
and doing all that stuff. That is [00:35:00] so
Sheri Wise: cool. Yeah. I have a friend that does special effects makeup for movies like Monsters and Zombies and stuff, and so sometimes she'll call me up and say, Hey, what are you doing this weekend? I'm going to this ComicCon and I need a dummy. And so I've done that several times.
Yeah.
Jason: No, doesn't he say I need a star.
Now
Sheri Wise: his demo dummy. All right. All right. So it's great. I love doing that. And honestly, I have so many friends that I've made through the MPS Society. Yeah. That, no one else would have that opportunity. No, I've got to travel to the conferences. Yeah.
Places that I never would've gotten to go. So yeah. Overall, mps. Is not great, but you can always find something good. Yeah.
Jason: So yeah, if I had a choice, I would without a doubt, say nope, don't want it at all. Now that I, since I do have it, I am grateful for the people that I've met through the NPS [00:36:00] Society, you, and for all the cool things that I've done.
I And I've been able to be in a pirate band. I've been, I was in a horror movie. That's what made me think of all your makeup stuff, I was in a horror movie with Alice Cooper, in large part because of the way I held myself and the way I, I. Worked for me. So I had that awesome experience doing that, that was great. And I was just thinking earlier what you're talking about parents is Yes, like your parents, they helped you where you needed it, like with your car setting that up. But the purpose of that was so you could be independent. Exactly. So I think that's a very important example. My mother did a lot of similar things for me.
My parents as much as she's the mama bear who wants her cub, like close by, she also understood the importance of letting me go out there, letting me fail, letting me fall
Sheri Wise: everyone's gonna fall, but she taught you how to get back up.
[00:37:00] And
Jason: that's the important thing. Yeah. So I think that's something that we should all take lesson with us and thank you very much. For chatting with me anytime, Are you doing anything awesome for Halloween this year?
Sheri Wise: Of course.
It's one of my favorite holidays. All right. What are you doing? Oh, we're dressing up and we've got a big party and then there's a friend of ours. He has one of those big city famous front yard Halloween displays that we get to help and build.
Jason: Nice. That sounds like a good time. I look forward to seeing all the pictures on that.
Sheri Wise: I hope they'll
Jason: be on Facebook. All right, .
Thank you everybody for listening for this month's episode. The Nmps Societies Our Voices podcast.