The Caregiving Soul:

[00:00:25] Dannelle: At the age of two, Mike and Sarah Porath’s oldest child Annabel, was diagnosed with Dup15q Syndrome. This rare disease has a variety of symptoms including motor delays, autism spectrum disorder, and epilepsy. Given such an unexpected curve ball, Mike and Sarah did what many parents would do and began to research. Fortunately, they connected to other parents who had children with the same rare disease. 

[00:01:00] Through growing relationships with others, they felt less alone in navigating the resources to support Annabel and help her thrive while also simultaneously raising their three younger sons. Hearing other parent’s stories inspired Mike and Sarah to develop the idea of a platform that would allow others to connect in a safe space for support regardless of the specific health concern. It became the launchpad for The Mighty, an online health community of more than 4 million users, sharing over 50,000 personal health stories. 

[00:01:47] Welcome to The Caregiving Soul. I’m Dannelle LeBlanc.  

[00:01:54] Mike: It was five years of thinking about it before Sarah finally was like, “Are you, are we doing this? Or like, are we just gonna keep talking about?” But it’s, it really grew from those beginning days and now it’s a network of close to 4 million people who are registered members of the community. 

[00:02:08] We’ve published almost 60,000 stories of people with some aspect of the different health journeys, you know, across over a thousand different health conditions, and really turned it into a network of people who are helping each other out in some way. 

[00:02:22] The impetus behind all of that was Annabel and the support that we got, as we were going through her diagnosis and those early days of figuring out all the ways we could help her. 

[00:02:30] Dannelle: This idea of having something that is so heartbreaking and devastating and painful, and transforming that into something of beauty and joy and affirming and nurturing for yourselves and for so many other people. And the night that you received this diagnosis and that seed being planted, can you share a little bit about some of the first steps that you took to learn about the disease? 

[00:03:10] Sarah: So, the first thing we did was Google, which, for better or for worse. This was almost 14 years ago, at the time there wasn’t a whole lot of information. There were several studies that had been done on Duplication 15q. A lot of them were in Italian because one of the main researchers was in Italy. 

[00:03:28] But we did find a family organization, a family kind of not-for-profit organization, and we reached out through the website and within a couple of hours the executive director called us, and it was so helpful to touch base with someone who had experience. Her son with Dup15q was several years older than Annabel, so she was a little bit further ahead of us. And it was comforting to be able to speak with someone who had been through this and knew the fear and everything that is kind of wrapped up into receiving a diagnosis like this.  

[00:04:02] And the grief comes in waves. There are some days where it’s far away and there are other days where it’s sitting right on your lap. So, and I’m not sure that that will ever change.  

[00:04:10] Mike: [Laughs] 

[00:04:11] Sarah: [Laughs] 

[00:04:12] Mike: Yeah, I, I was able to find an old PDF file that was from this not-for-profit organization that supports families that have children with this rare disease, and they actually, it was years prior, had put together stories from parents who were taking care of their children with this. And they were really, really powerful. Again, I’m reading these stories, they were hard to read, because they were talking about kids having seizures 30 times a day, and, and just really difficult stuff across the board. 

[00:04:42] So, there was fear in some of them, [Laughs] but there was also surprisingly humor and joy. And you could see that these families were finding their way through. And it made me feel less alone. It made me feel like there are others that are in our shoes, and they actually seem to be managing this, you know? And so that was helpful. 

[00:05:00] And so, really when I think about like where The Mighty started, in my mind it was the six stories that I read from other parents, And down the road it was like, what if we created the same thing across any type of health condition that people could read other people’s experiences feel less alone. And so, on day one we were fortunate to, to get an introduction to a community. I think community helps so much. 

[00:05:22] Obviously you need, with any type of health situation, you need great medical professionals around you, but they’re not with you through every step of the journey. They’re not with you on all the highs and lows that you experience day to day, but the other parents can be in a lot of ways. And so, that was, that was really helpful for us. 

[00:05:39] Dannelle: Wow, that’s amazing. You know, one of the things that stands out is this idea of what’s possible, and when you connect with others who are sharing a similar experience, there’s an opportunity to see what’s possible, and to hear and see the hard parts, I think is so important, and not to have this rose colored glasses, or just complete hopelessness. 

[00:06:17] It’s not one or the other. It’s both, and that’s what helps to enable us to make more informed decisions and choices for, for your daughter, for your other children, for yourselves. And, on The Mighty, one of the things that you talked about was feeling like being in a sea of questions and sharing what that looked like for you. How do you use The Mighty to help others navigate their own sea of questions? 

[00:06:49] Mike: We started with connecting people through stories and I think that part of that was just, I didn’t have a skillset around a lot of things, but I did around audience development and community building online, again working through some of the news organizations and things like that. So, it was how do I leverage some degree of professional experience on, on helping people tell their stories and then finding others that digitally, online through social or search or those things, that will actually find that story really meaningful and provide a connection. 

[00:07:19] Again, it’s just incredible how close that bond can be given that these are really a group of strangers, you know, that otherwise would, [Laughs] would never connect. And so, the way that we tried to design the Mighty was through these stories that people, that they would resonate with folks. First, we reached out and people had individual blogs and things like that where they were sharing about their own journeys. 

[00:07:41] And so, the first step was just going out to those folks and trying to find the best stories that they had put together and asking for their permission to put them on our platform, that were gonna try to reach a lot more people with them. And then, they saw that and then they started submitting their own to The Mighty. 

[00:07:54] And I remember [Music] the very first submission was a woman in the Midwest who, wrote about this experience, where she was pregnant and had learned that the baby that was coming had a fatal disease and would live for very short period of time when she was born. And that, she delivered the baby, she lived for 22 minutes and then passed away. And she wrote a story about like how beautiful those 22 minutes were and how they really changed her life going forward in the way that she perceived things and the way that she connected with people. 

[00:08:24] And that story, when we put it out there, got hundreds and hundreds and hundreds of comments, because so many other people had been through something similar and this woman was able to articulate it in a way that wasn’t just, obviously it’s a very tragic thing to go through, but she was really writing about how it changed her life in a good way, how it changed her family, and seeing the response of that, it made me realize that this vehicle of stories can really build community, like stories are the start for community. 

[00:08:53] And so, that was the path that we went down. So, it started with, with stories and then we started adding social networking features so people could connect and they can form groups and, so we’ve had millions of conversations among people within the mighty that start, most people end up finding a story, that’s their vehicle to get into The Mighty. And so, it’s a lot of just figuring out what resonates, you know, with the community.  

[00:09:15] [Music Ends] 

[00:09:15] Dannelle: So, a very organic process and growth  

[00:09:19] Mike: Mhmm. 

[00:09:20] Dannelle: Of the –  

[00:09:20] Sarah: Yeah. 

[00:09:20] Dannelle: – site, that’s very much integrated with the community, which I, which is why it works.  

[00:09:28] Mike: It would not work unless people were willing to be vulnerable, share their own experiences, offer support to each other. It was a few years in when we, that it kind of dawned on me that what we were really solving for was isolation. You know, you’re going through some type of health experience, your health journey, you know, a lot of people have friends and family who they’re close to and who want to be helpful, but it’s different talking to them than it is talking to the people who are actually with that same shared, lived experience. 

[00:09:56] And, they’re complimentary. They, they’re not against each other. They work together. And so, what we really try to do is focus on that area. Let’s bring, the people in, whether they’re patients or caregivers or healthcare providers, and bring them into a conversation, usually through stories, that gets them talking. 

[00:10:13] Sarah: The Mighty very quickly became a place where people felt safe, and that allowed them to be comfortable sharing their stories, being vulnerable, and just putting themselves out there where they might not necessarily feel that, that sense of comfort and safety on another social platform. 

[00:10:33] Dannelle: How did you accomplish that? What do you think it was about The Mighty that allows people to feel safe in sharing in a way that they might not otherwise?  

[00:10:44] Mike: I would boil it down to two things. One is the culture that’s created by the stories, right? It’s when you read someone’s story, you want to share something similar to that. A story is a beginning of a conversation really. And so, it opens that up and if the way you see somebody else write about it, not in a, I’m just gonna vent and be angry about this, but really taking a constructive approach, then it’s more likely that the, anyone responding to that is gonna do it in a similar vein. And the second part – so we have a 24/7 kind of moderation team, their goal is to keep this a safe and supportive community.  

[00:11:18] Dannelle: So, this intentional energy that you’ve created, an intentional environment that you have modeled for others to follow, and I love it. What has your parenting experience been like navigating day-to-day aspects of having kids, and the more specific and nuanced experience of ensuring your daughter Annabel receives nurturing and informed care? Because it’s clear to me that you guys are amazing, and I know that doesn’t happen by the wave of a magic wand. Okay. That takes work. So how do you do that y’all? 

[00:12:05] Sarah: Annabel has a lot of needs, over the years has needed a lot of extra time and attention and services, and there were years where she would have therapy after school four days a week, but we’ve also tried to really balance that with making sure the boys have their own thing, that they’re not just getting dragged around to Annabel’s activities. 

[00:12:32] They have their own lives, they have their own identities, and Mike and I are firm believers that they have deeper empathy and compassion than your average 13 and 10-year-olds, I think, because of what they’ve experienced so far growing up with Annabel, and they’ve, for better or for worse, kind of been forced to develop this skillset early. But they know, and they can sense, when she’s not having a good day. And Mike tells a story with – Isaac was little – 

[00:13:07] Mike: Yeah.  

[00:13:07] Sarah: – like two or three, and he –  

[00:13:10] Mike: Yeah, he came home from like, I think it was kindergarten. I said, “Hey buddy, how’s it going?” And he’s like, “Good.” He’s like, “How’s Annabel’s day?” And for, to think of like a three- or four-year-old asking about his sister’s day before he’s really telling me, like, he brought it up, right? Like he wanted to know if she was having a good day or a rough day or whatever. 

[00:13:23] And he’s always had that sense, thinking about her first and how that a couple years later in school he mentioned to Sarah and me that there was another kid in his class that was like Annabel. Now that didn’t mean the same rare disease. What he meant is there was a kid that needed help, and had an aid, and he said, “Could we do a play date with him?” Well, when Sarah contacted that kid’s mom, she broke down in tears cuz no one had ever asked to do a play date with him. You know, he just picks up on these things and it’s interesting to see.  

[00:13:55] Sarah: [Laughs] I’m not sure we had a whole lot to do with that. 

[00:13:58] Mike: [Laughs] 

[00:13:59] Sarah: [Laughs] Other than, I mean look, the kids learn so much more by our actions than our words a lot of times, right? And I’d like to think that Mike and I model empathy and compassion – 

[00:14:09] Mike: Like, like 95% –  

[00:14:10] Sarah: Right [Laughs] 

[00:14:10] Mike: – of the time.  

[00:14:11] Sarah: [Laughs] Most of the time. [Laughs] We all have our days, but I, I think, we really try and just foster an environment where everybody feels like they’re getting what they need, with the understanding that you’re not always going to get it right. And, and the boys have had to deal with, especially when they were younger, where, “Okay, we’re gonna go to the zoo and we’re having a great time, but then Annabel started having a rough day, and so we have to leave early, or, you know, fill in the blank, like the beach, the, the park, whatever, and they learned to roll with it. So, they have become very adaptable. 

[00:14:48] And I think how we handle those situations informs them. If we can roll with it and be like, “Oh, you know what, sorry guys, guess what, we’re gonna go home and have ice cream instead”. And shift the mood, and then Mike and I can break down on our own. And I think it’s also important for all of the kids, like, to be able to experience the full spectrum of range of emotions, right? So, they’ve seen me cry, because it’s been a bad day.  

[00:15:16] And so, I think it’s a lot about finding the balance, looking for – [Music] I particularly, I like to look for the celebrations. Like, we, what can we celebrate? What can we make fun? Because we’re not always gonna be able to do everything that other families might be doing, because it’s just, it’s difficult. 

[00:15:37] Mike: I think the pandemic was really rough for us because, and for a lot of families, for different reasons, for us, kind of our version of hard during the early days of Covid and then, and following that was, Annabel lost all of her services. Zoom school didn’t work for her. And all of the therapies, all of those services went away, no daily routine like she was used to. She was also going through puberty and we were making changes to some medicines around that would help with her behavioral challenges. 

[00:16:03] So, it’s like the perfect storm of all of these things. And so, as Sarah and I were talking, we’re trying to figure what do we do about this? There’s not a lot of places to go. It’s Covid, everything’s shut down. And so, we came up with the idea that I would, I started taking our middle two camping. And it was just a great release. It was something we could do during Covid that was like outside, you know, I think gave Sarah a little bit more space to work with Annabel as well, and just trying to make sure that everyone’s getting the love and attention they deserve.  

[00:16:32] [Music Ends] 

[00:16:32] And, and I think the first step in all of that was just recognizing that we didn’t have to try to be like every other family. We’re, we just recognized we have a different dynamic and let, let’s embrace it versus trying to live like everybody else lives. 

[00:16:47] Sarah: Yeah. That was not an easy realization to have, but Mike’s right, it, it felt much lighter once we came to terms with that.  

[00:16:57] Mike: The last year was probably the most difficult year for us as a family where, because of a lot of the behaviors that Annabel had picked up, all of the different services that we were using really weren’t working and helping. And so, through a combination of discussions with our doctors and therapists and all that, we discovered a program in Atlanta, it’s called the Marcus Autism Center. 

[00:17:18] And so, we were on a wait list for nine months, and then we got a call last February, and so, long story short, we spent nine months apart as a family where I was with Annabel in Atlanta. She was in this program five, six hours a day. And I was running The Mighty out of the two-bedroom apartment that we got there. Sarah was home with the three boys, and we thought it would be like three to six months. It ended up being nine months. And then finally in December, we were able to bring – 

[00:17:43] Sarah: Yeah. 

[00:17:43] Mike: – everybody home, but it was just hard on everybody for different reasons, but we made it work. And looking back, sometimes I scratch my head and think like, how did we make all that work? But it really was this draw on resilience, that is not a skill that – I think you only develop that skill by being forced to develop it. You know, that year was a huge sacrifice for everybody in the family, but I think it was worth it in that Annabel is doing significantly better. 

[00:18:07] Sarah: Mm-hmm. 

[00:18:08] Dannelle: Wow. Golly, you guys are amazing. It’s really hard when we have an expectation of how things are supposed to be, how things are supposed to go, how things are supposed to look, and we see and hear those things all around us, and it’s just not that way for us. And so, you guys have created this beautiful, have a beautiful family, and figuring out what works for you, letting go of those expectations, I think, as you said, is key.  

[00:18:47] What else do you feel is important for listeners who are caring for a child or a family member with rare or chronic illness to know? 

[00:19:04] Mike: First thing that I think of is you’ve gotta find a way to take care of yourself first. And there’s been periods of time where I’ve done a better job of that and periods of time where I have not, but I feel like not just me, but Annabel and the others in the family end up doing better when I’m doing better. I’m always doing better when I’ve got some form of, call it alone time, call it whatever you want.  

[00:19:26] Sarah: And it’s, you know, everyone talks about self-care, right? It’s become this like buzzword, and it means different things to different people. It’s not all just bubble baths and manicures, it really is honing in on what re-energizes you. What do you need to take a pause and rebuild? 

[00:19:46] And it is absolutely not selfish. I, I think it’s the opposite. I cannot be who I need to be for Mike and the kids if I don’t take those pauses. And it doesn’t have to be a big chunk of time, even if they’re tiny little moments, take them. 

[00:20:04] Dannelle: Sarah, Mike, thank you so much for joining me today on The Caregiving Soul. It has been absolutely wonderful to talk with both of you. You’re just lovely, lovely people. What you’ve done with your family, and for each other, is bigger, has like so much, there’s so much I can feel it. There’s an energy that ripples out from what you’ve done. And it’s so important for people to witness that, [Voice Wavers] especially right now. And so, I wanna thank you for that. 

[00:20:40] Mike: Yeah, thank you. It’s, that’s very nice to hear.  

[00:20:44] Sarah: On the hard days, it, it’s easy to forget the good things. So, thank you.  

[00:20:48] Dannelle: Thank you so much. 

[00:20:50] Sarah: Thank you, Danelle. It’s been a lot of fun and a real pleasure to speak with you as well.  

[00:20:54] [Music] 

[00:20:57] Dannelle: Thank you for joining our conversation with Mike and Sarah Porath. Mike and Sarah serve as an amazing example of how to find ways to create beauty and joy in a hard place.  

[00:21:13] Sarah defines self-care as a question. What reenergizes you today? Reframing self-care beyond a designated action we need to take to a question we ask ourselves, leads us to what we actually need in the moment. When we’re able to let go of expectations and assumptions of how things should be or look, we make room for what’s possible. 

[00:21:46] Check out our show notes to connect with and follow Mike and Sarah, and to learn more about The Mighty. 

 [00:21:54] Every episode of The Caregiving Soul has a page on empoweredus.org where you can find the extended show notes, including tips and takeaways, transcripts, and relevant resource links.  

[00:22:06] For additional bonus content from this episode, and to connect with us, be sure to follow the Empowered Us social channels on Instagram @empoweredusnetwork and Twitter @empowereduspod. 

[00:22:21] The Caregiving Soul is an Empowered Us original, presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to the show wherever you get your podcasts.  

[00:22:37] And remember, the right care includes care for you. 

[00:22:46] [Music Ends] 

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