65: Parenting a Child with Juvenile Myositis | Jason Stafford

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Summary:

When Jason‘s teenage son started complaining about pain and muscle weakness, he figured it was simply “growing pains.” When Logan’s symptoms worsened, however, they knew something much more serious was going on. Listen as Jason and Emily talk about managing the rare condition of Juvenile Myositis.

Quotes:
  • “Nothing he experienced was typical of even JDM, so he’s a misfit within misfits.” – Jason Stafford
  • “I’m going to either find it or create that bucket challenge moment where JM goes viral. And there won’t be anyone that doesn’t know what JM is.” – Jason Stafford
Highlights:
  • 0:49 – Being a misfit
  • 3:41 – Logan’s story with Juvenile Myositis
  • 11:43 – Helping Logan through the diagnosis
  • 14:52 – What the future looks like with Juvenile Myositis
  • 18:43OneHope
View Full Transcript

[00:00:00] Mothers of Misfits: Welcome to the Mothers of Misfits podcast. Join me for conversations about how to advocate for our kids in a one size fits all world. Be sure to subscribe, so you never miss an episode.

[00:00:17] Emily Melious: Hey everybody. Welcome back to another episode of the Mothers of Misfits podcast. We’re joined by Jason Stafford today. I found out he’s actually a neighbor of mine, such cool people in the Pittsburgh area. He was a stay at home dad for 14 years. He worked part-time with Stitch Fix for five and a half years, and he’s now a cause entrepreneur, love that term, with ONEHOPE Wine. He’s also Co-President of the Pittsburgh Chapter of the Cure JM Foundation. Jason, thank you for coming on today.

[00:00:47] Jason Stafford: Thank you for having me, Emily.

[00:00:49] Emily Melious: Yeah, so we were just chatting a minute before we hit the record button and you were sharing with me that you yourself have felt like a misfit. So I’m curious to have you share with us, how so? Why does that word resonate with not only your family, but you specifically?

[00:01:06] Jason Stafford: Sure. So I started being a stay-at-home dad when Logan was three months old, he’s now 14. And that was before it was really, truly in vogue to be a stay-at-home dad. And it was a choice I made, it wasn’t out of necessity. I mean, it wasn’t because I had lost a job or anything in the case. My wife and I were at a point in time where we really were struggling with the idea of sending him to daycare, and having someone else raise him. And it was, you know, he was going to be in the car 45 minutes one way or the other, based on the fact that I worked in one direction from the house 45 minutes, my wife worked in a different direction of the house 45 minutes. So we had to try and find a place that was close to one of our work, just in case there was something that did happen.

[00:01:47] And, I crunched the numbers and I looked at things and I made significantly less money than my wife, so it didn’t make sense for her to stay home. But when I did the budget and everything, I was like honey, I think we could do this, this will work. But as far as feeling like a misfit, like that set in, anytime I would be out in public with him and even just doing the daily things, like going to the grocery store and doing the shopping or taking him to the park.

[00:02:10] Cause it was like, oh dad’s babysitting today. I’m like, no, dad’s being a dad today. You know, and then he got to the point where we weren’t going to be sending him to daycare because that’s the whole point of me being home with him. And we’re like, all right, so how do we start to get him socialized?

[00:02:25] And I was looking for moms groups to join because there weren’t dad’s groups at the time at all. We lived in Greensburg, PA at the time, and I found a moms group, it was a great group, but before they would allow me to join, they wanted to pull their members to make sure that it was okay. I was a little taken aback by that, right? And it was kind of like, wow okay, that’s kind of rough, but I mean, they did and they allowed me. And so it was good, all in the end it worked out.

[00:02:54] Emily Melious: Yeah.

[00:02:55] Jason Stafford: And we got Logan to socialize with other kids that were his age, and we got to go to play dates and schedule that kind of stuff because I wasn’t from the area, so I didn’t have a friend group that also had kids. Like we were transplants. I lived in Miami before we lived here in Greensburg, and then now in Pittsburgh. My wife’s from the area, so that’s what brought us here. And so I didn’t have this friend group that I could rely on to socialize my son. So I needed to reach out to these strangers and say, hey, can I be part of your group? Can I get my son socialized?

[00:03:24] Emily Melious: Well, you are so brave to, knowing that you are a misfit to still pursue that and still join and pursue those relationships and friendships. And who knows, maybe other men have joined since because you pioneered that pathway. What we’re really here to focus on, Logan as you said, he is 14 years old. And in August of 2020, so when he was 13, he was diagnosed with juvenile myositis.

[00:03:53]Jason Stafford: Yeah. So, technically it’s juvenile dermatomyositis, which is a complete mouthful. The foundation for Cure JM is, the Cure JM Foundation, juvenile myositis, because there are different types of myositis that exists within that diagnosis. But a majority of those that are diagnosed have juvenile dermatomyositis. Yeah, try saying that 10 times fast.

[00:04:17] Emily Melious: Yeah, I’m feeling there’s a mouthful there. So for those of us that have never heard of that before, or just vaguely familiar with it, tell us more about the condition and how it affects Logan.

[00:04:27] Jason Stafford: Okay. So what happens is that it’s a rare autoimmune disease, and there are roughly only about three in a million kids in the United States who are diagnosed with this.

[00:04:37] Emily Melious: Wow, okay.

[00:04:39] Jason Stafford: And it turns your body’s immune system upon itself. So it’s like the body just wants to fight, you know, the immune system is looking for a battle, so it starts battling your own body. And one of the major things that takes place is so, because it’s the dermatomyositis part is skin, is the largest muscle in your body, and it attacks your muscles. And so it causes a rash or can cause a rash. And he developed a rash on his arms, a little bit in the sideburns, between his shoulder blades, but nothing he experienced was typical of even JDM, so he’s, he’s a misfit within misfits. You know what I mean like so, and then over time, like when we look back hindsight’s 2020, and we can see that he had some complaints about strength that we didn’t pick up on because he was 13 and he was, you know you have to hold an iPad for school or write a lot at school. And he’d complain about his arms getting tired frequently.

[00:05:37] And we never really, it was like, okay, maybe it’s growing pains. And then the rash developed. And then it took a long time before we really saw the strength having depleted. We would take family walks and things and we would go and, I mean you know Pittsburgh, Emily, it’s not flat. So, you know, and in the snow and yeah, it’s like, I feel really old when we talk about it like that, right? I walked to school uphill both ways and it’s like, yeah.

[00:06:05] Emily Melious: Yes, but Pittsburgh is definitely not for the faint of heart when it comes to walking, because there is no flat spot.

[00:06:12]Jason Stafford: So we would be out for a family walk and he’d be like, oh, I just don’t want to go. And I was like, okay. So I just thought this is my 13 year old son just didn’t want to take walks with his family anymore cause he’s 13. Like that seemed normal to me. And then he would like put up a fight the whole way along. Like, ah, I hate this, I don’t want to do this. But I didn’t know the struggle he was going through. I had no idea how difficult it was for him. So he was so depleted at that point in time, that that was really taxing on his body. And we had no concept of that at the time. And then we were, it was summer, starting to get close to August. I was trying to get the kids outside and we started playing catch with a baseball in the yard. And his throw was weak. And so he has a younger brother, Finnegan, who’s two years younger and Finnegan’s like, I barely could catch the ball it was so hard. And Logan could barely get the ball to me. And so I start thinking, I’m like okay what’s going on with this? This is strange, but I know Logan’s not the athletic type per se. So he likes his video games and loves YouTube and is into computer coding. So I thought maybe he’s just, you know, maybe it’s just lack of athletic prowess.

[00:07:21] I’m not sure. But then we went to the basketball court with the whole family, we went there. My wife, Mary Beth, and I, and Finnegan and Logan, and we were just going to play a game of H.O.R.S.E. and Logan didn’t have the strength to have the ball hit the rim from standing directly underneath the basket.

[00:07:42] Emily Melious: Wow.

[00:07:44] Jason Stafford: That’s when Mary Beth and I realized there’s something wrong, like something is wrong here. And we went home that day after we played basketball and she and I looked at each other and we were just like, what is going on?

[00:08:00]Emily Melious: So who did you call? Your pediatrician at that point?

[00:08:03] Jason Stafford: Yeah. So actually we were thinking, okay, yeah what do we do? Like what’s the next step? And Mary Beth happened to look up online. She just happened to Google, strength loss and rash. And the thing that came up was JDM.

[00:08:19] Emily Melious: Oh, how fortunate, because I mean, she just had the perfect search terms because as you described, those symptoms in and of themselves could probably be easily explained away by other things, but the fact that she put them together, and that that was the first thing to pop up. Wow, what a blessing in that moment.

[00:08:36] Jason Stafford: Yeah. She’s, I mean, she diagnosed our son basically, you know? She put those terms in and that’s what came up and she read it and she’s like, honey, you need to see this. And I looked at it and I read it. And then I started thinking back about all the things, the rash, the weakness in his arms, the fact that he couldn’t do this, and his inability to want to walk.

[00:08:54] So it also affects his mood. Like the disease is, it drains you. It doesn’t just drain you physically, but it can drain you mentally as well. And we didn’t, like I said, you know, he’s 13 going on 14, puberty sets in. You don’t know like, is it a disease? Is it just life, like what’s happening? But my mom who was just here, she just left, and it’s the first time we saw her since last July. She made the comment when I was driving her back to the airport that, Logan seems like he’s such a different person now he’s in such a better mood. She was like, I was really worried about him last July. And this was just before our diagnosis. She’s like, he seems so down. And I stopped and, I realized at that moment I was like, yeah mom, you’re right. I’m like, I didn’t put two and two together at that point in time because when you’re in it, it’s so hard to connect those dots. Like at that moment. But yeah, when we look back, we can see all of it and we go, okay yeah wow, it affected his mood, it affected it strength, he had a rash. And we tried everything. Have food allergies in the family, we tried eliminating beef. We tried eliminating gluten, and nothing would clear. I mean, yeah, of course we went to the pediatrician about the rash and they gave him some steroid cream. So all of those things, but it wasn’t until we had that moment of clarity where my wife was like, I think this is it.

[00:10:15] We call the doctor, got him in the next day to the pediatrician. Big shout out to St. Clair Pediatrics. Dr. King is awesome. And he did, you know, basic strength tests and things, and we decided there was, yeah, there’s something there and we need to push for blood work. So we had blood work done that day.

[00:10:32]Emily Melious: And you had it confirmed by the next day?

[00:10:35]Jason Stafford: It was, yeah. Yeah, so that next morning I got the message through the health portal and I looked at all the blood work and there was a myriad of things that were flagged. And that’s, you know, bells and whistles going off again. So I reached out to the doctors and I’m like, hey, cause it was the first thing in the morning. I woke up at 6:30 in the morning and I got that notice on my phone and, you know, as a parent you’re like, okay, what do I do with this information, right? And I know the doctor’s office isn’t even open yet, so I’m like, okay, well, I got to sit on this for now three hours until they turn their phones on at nine o’clock.

[00:11:07] So I called them immediately at nine o’clock. And of course, Dr. King was head hospital duty that day, so he wasn’t in the office. So they had to reach out to him and I’m like, all right, well I’ll wait and see what I hear. I had no idea. And this is during COVID. There had just been reports about that weird like side effect from kids who had experienced COVID and then were like suddenly becoming debilitated and passing away. I was like, so all of these things were in my head.

[00:11:32] Emily Melious: Oh, yeah. Every parent goes through that. I mean, just those haunting thoughts about the what ifs and it could be and where did we go wrong and why didn’t we notice it sooner? You know, we go through that self guilt trip as well. How did you help Logan deal with such a serious diagnosis? I’m putting myself back in my 13 year old self and everything was already hard and there’s so much social pressure and you’re trying to fit in. And for young men, you want to be strong. You’re, you know, really growing into yourself as a man. And this is counter in many ways to that experience for him. How do you help him through this?

[00:12:13] Jason Stafford: So I think my wife and myself, it was about finding the positivity in it. So yeah, of course there’s nothing positive about winning the horrible genetic lottery that he won, you know, three in a million kids. But how are we going to react to the situation that we’re put into? And Mary Beth and I had always maintained a positive outlook.

[00:12:36] Yes, we had our moments where we sat and we cried with each other. And we held him and told him that we’re going to get him the help that he needs. That’s, you know, that was the first step is like, okay, so we’re going to go, we got the call from the doctor and they’re like, we want you to take Logan to children’s ER.

[00:12:51] And that was that day. The day after we were at the pediatricians, we got the call back when they finally got the information from me and had seen the blood work themselves, we needed to take Logan to the ER at children’s. Fabulous facility. Pittsburgh has amazing medical care, thank God.   We went there and the treating physician, so it’s a rheumatologist that deals with this kind of disease state and there’s some similar components to lupus or RA. And so the rheumatologist on staff came in, examined him, and kind of was like, yeah we think this might be the case. So they re-ran blood work and they said he needed to be admitted so they could do other tests to confirm the diagnosis.

[00:13:30] And so they admitted Logan that day. And of course he’s scared. I mean, I don’t know what 14 year old kid likes needles. So he doesn’t want to be poked and prodded and he’s worried and nervous. And we just kept telling him, I said, buddy, this is what we need to do in order to make sure that we get you healthy and that we get you the help you need. And I think because he trusts us, he was able to believe that. And so we did, we got the MRI done, we stayed overnight, he and I stayed at the hospital cause of course it’s COVID, you can only have one adult in the room. So, you know, there’s that going on. And then, you know, Mary Beth and my other son Finnegan are home.

[00:14:05] They’re worried out of their minds because they’re both very invested and worried, and none of us have any information about what’s going to happen or how we move forward from this. And it was massive dose of intravenous steroids while we were there to reduce muscle inflammation. They showed us the MRI, they took an MRI of his lower extremities. And when they showed us the MRI, anything on the MRI that was like white or grayed out was inflamed. Well, basically the whole thing was gray and white. So the fact that he was still getting up out of bed was a victory at that point. Like the fact that he was able to sit up was a victory at that point. So there are other kids who have this disease that literally can’t lift their heads.

[00:14:52]Emily Melious: So you just said you were grappling with what the future looks like for Logan in that moment. What does the future look like for him? Is there a cure? Can he regain anything that he’s lost in terms of his muscular movement? What does that look like for him?

[00:15:08]Jason Stafford: So there is no cure, and that’s why it is so important that we get the message out about the Cure JM Foundation, because they are the ones who are giving grants to doctors for research and clinical trials, to try and come up with a cure. As far as Logan’s outlook right now, everything is looking very good for him. He has regained a lot of his strength because of the medicines he’s on, but I mean he takes a huge pill box of medicine every day. He has a weekly injection of methotrexate, which is a chemotherapy drug that they use to treat this. He takes Plaquenil, which was a Drexel chloroquine, which we all know of because of COVID.

[00:15:48]So he’s on that. He’s on Prednisone. He has to take folic acid to prevent hair loss because of the methotrexate. Pepcid, because the steroids can cause acid reflux. And then we have to go for monthly infusions now because we had a flare up. So we had been weaned off of the steroids because steroids the doctor said is it’s like treating something with a jackhammer.

[00:16:11] Yeah, it takes care of the problem, but it does a whole lot of damage in the meantime. So the quicker we can get him off the prednisone and the better, but when we weaned him, he started to have a rash reappear. So I mean, we see the doctor regularly anyway, but we took him to the doctor said, hey, this is what’s going on. So then we had to introduce IVIG, which is an intravenous infusion of, I butcher this one all the time, immunoglobulin, I believe so. So that’s an eight to 10 hour process for him once a month.

[00:16:46]Emily Melious: Oh my goodness. Wow. And he just sits there and plays games or read books while this is taking place?

[00:16:54]Jason Stafford: Yeah, he and I sit there and his mother’s going to the next one. So Mary Beth will be with him. So we go to the infusion center at children’s hospital. He brings his laptop, he brings his, you know, his tablet, his Nintendo switch. We bring some games to play. We played UNO Flip last time we were there, that was a fun one. But I mean he’s, yeah so he’s got to sit there with an IV in his arm, and he’s there for a solid eight hours with this medication that gets pumped into him. And the very first time was atrocious because we had some severe side effects. So he ended up, he suffers from migraines already as it is, so the treatment itself, if it goes too fast, can also cause headaches and migraines.

[00:17:36]And we were new to this and we didn’t understand all the parameters because you don’t have all of that information at your disposal. There’s not a lot of resources to rely on. So we rely on the JM Facebook groups that are out there. So if you know anybody who has similar symptoms, Facebook has a great community if you search JM or Cure JM, there are a couple of different Facebook groups out there that you can get access to. But first and foremost, I recommend you go to Curejm.org and explore their website because there’s a lot of information there. And they are the ones who are working with the doctors who are leading the research.

[00:18:12] So if you have questions about it and you’re not sure, or if you think that any of these things that I’ve said sounds similar or familiar to you, I implore you to look at the Cure JM website. Talk to your pediatrician about getting a referral to a rheumatologist because a rheumatologist is going to be your best friend at that point.

[00:18:33] Emily Melious: There is a tribe for everybody. There is a place where we feel like we’re fit-ins not misfits, and it’s good to know that those resources, those communities exist. And on that note, I’d love to hear more about ONEHOPE. So how did that get started and how can listeners get involved?

[00:18:51] Jason Stafford: Okay. So ONEHOPE is a napa vineyard out of California, they became a company in 2007. The founder had started the company, well he had the idea when he was restocking shelves, he used to work for Gallo Wines. His name is Jake. And he saw how quickly things that were branded with the cancer ribbon were flying off the shelves.

[00:19:10] And he, at that point had the thought like, it’s kind of gimmicky, why are they only doing it for a month? Why is there not a give back all the time? So, he shelved the idea and then his good friend ended up with stage four metastatic breast cancer. And that pushed him to action.

[00:19:27] Yeah, horrible right? But, but this is the thing. So without these moments, without these struggles, we may not act on these amazing ideas that we have. So he had the idea years prior, and then this happened to him and he’s like, okay, I need to act on this now. So he and his friends started a wine company where every purchase donated back to charity.

[00:19:47] So they donated, initially they were donating 50% of their profits to charities. And a few years later, they introduced a direct sales approach to the company. And that’s when what I do as a cause entrepreneur was born. So as a cause entrepreneur, I’m a basically an affiliate marketer for ONEHOPE Wine, and ONEHOPE will donate 10% of all the sales that I generate through my special party links to a 501(c)(3) of my choice.

[00:20:15] Of course, my choice is going to be Cure JM Foundation, right? But they also are willing to donate to other causes as well. Like if I were to sell you a bottle of wine, Emily, if you went onto my shop link and you bought a bottle of wine, 10% of that purchase is going to go to the Cure JM Foundation.

[00:20:32] Another portion of that purchase is going to be funneled into charities that are providing access to clean water, food, health, and education, both locally and globally. So they’re making a world of difference. Since 2007, they’ve donated over $6,500,000 to charity, and a million of those dollars came last year in 2020. The company is growing and the impact is growing with it. So, I received a bottle of ONEHOPE wine for, well actually my wife, Mary Beth received a bottle of ONEHOPE wine for Christmas. Of course we shared it. So we’re wine lovers. We like wine, it was good. I was like, this is a good wine, all right nice. It was the bottle of Chardonnay and it was a nice dry white, and we liked it.

[00:21:15] But on the back of the bottle is the message about the give back. And then I realized, okay, so there’s something to this. I looked in it, and then I saw that they were a direct sales company. So there was an opportunity for me to get involved. I did my research and my due diligence, and I realized, okay, this is legitimate. These people are giving back on a level that I’ve never seen before. And I knew that it was an opportunity for every time I got to talk about ONEHOPE, I got to talk about Cure JM, and I got to talk about Logan. And I get to raise awareness for a disease that most people have never heard of. So we’re talking 3,000-5,000 kids in the United States have JM.

[00:21:57]And when we think about that and we think about ALS, ALS is also a very rare disease. There’s only about 20 to 25,000 people in the United States have ALS, but I guarantee you, everybody you’ve ever talked to knows what ALS is now because of the bucket challenge. So my hope is that through my affiliate marketing with ONEHOPE, my ability to be the Co-President of the Pittsburgh Chapter of the Cure JM Foundation is that somehow some way I’m going to find that moment. I’m going to either find it or create that bucket challenge moment where JM goes viral. And there won’t be anyone that doesn’t know what JM is.

[00:22:46] Emily Melious: Awesome. Yeah, and another small act is just share this episode. That takes five seconds and somebody else can learn about JM and somebody else can learn about JM and who knows where that will take us, but maybe just sharing this podcast episode is our version of the water challenge.

[00:23:05] Jason Stafford: Yeah, this, this could very well be our bucket challenge moment

[00:23:08] Emily Melious: This this could be our bucket challenge, and how cool would that be? Because that’s honestly my heart behind this podcast is just getting more awareness out, supporting parents, letting everyone know you’re not alone in this. And Jason, I just think it’s amazing. You are absolutely moving the needle. I don’t know if it always feels that way, but I am sure that you are having tremendous impact on multiple levels. So thank you for coming on and sharing your story, Logan’s story, your family’s story. Thanks so much.

[00:23:38]Jason Stafford: Thank you for having me.

[00:23:40] Mothers of Misfits: Thanks for joining us for this episode of the Mothers of Misfits podcast. Make sure to subscribe, so you never miss an episode. We also invite you to visit us at MothersOfMisfits.com.

Resources:
  • If you are new to the JM world, Jason recommends searching for JM or Cure JM in Facebook Groups to find support.
  • Visit Curejm.org/donate to learn more about Juvenile Myositis
  • Learn more about OneHope and their mission to give back

Speakers:

Emily Melious

Emily Melious

Talent Management Consultant | Career Coach | Podcast Host

HOST
Jason Stafford

Jason Stafford

Entrepreneur | Dad | Co-President Cure JM Foundation – Pittsburgh Chapter
GUEST

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