The Mix Tape: Ep. 2 — Putting the “Me” Back in Medicine: The Superdad of Rare Disease

When a rare disease enters your household you have to take drastic measures, but why not have fun while doing it? Mix Talent's KC McAllister discusses the ups and downs with a first-hand experiencer: Ryan Sheedy. Sheedy is a father of a Costello's Syndrome patient, funny guy on his Instagram @dadhappend and founder of mejo, an online tool that helps caregivers organize medical information to create a personal health journal specifically tailored to their child.

Transcription

Unison:

Welcome to The Mix Tape.

Valerie McCandlish:

I’m Valerie.

Natalie Taylor:

I’m Natalie. We are glad to have you back for Episode 2. Rare Disease Day was just a couple of days ago, and as we continue our journey to raise awareness, we have another story this week to highlight a story of a family living with rare disease; this time with Costello Syndrome, which is an ultra-rare disease.

Natalie Taylor:

By comparison, rare diseases are categorized because they affect fewer than 200,000 people in the US. A disease is considered ultra-rare when it affects just 1 in 50,000 people in the world, or 20 patients in a population of one million, which to me is hard to even wrap my brain around, because that’s just such a small population of people.

Valerie McCandlish:

Absolutely. Costello Syndrome is an autosomal dominant genetic condition caused by mutations in the HRAS gene. Costello Syndrome is an extremely rare disorder that affects multiple organ systems of the body, so this can include growth delays after birth; short stature, extra loose skin on the neck and palms of the hands, your fingers, and souls of the feet, non-cancerous tumors around different parts of the body, developmental delays, an intellectual disability and a characteristic facial appearance as well. Additionally, there’s an increased incidence of congenital abnormalities of the heart and cardiomyopathy.

Valerie McCandlish:

What’s interesting is that Costello Syndrome affects males and females in relatively equal numbers, but approximately just 350 individuals have been reported worldwide, which is just shocking.

Natalie Taylor:

Today we have K.C. McAllister back for this season, to speak with Ryan Sheedy, who is a parent and advocate of a child diagnosed with Costello Syndrome. Ryan is a super dad, and will be sharing his family, and his son Reynolds’ story.

K.C. McAllister:

Throughout the month of February, our mixed talent team, once again, joined the global movement to raise awareness for the 300 million people living with the 7,000 known rare diseases. Our second annual Rare Heroes campaign celebrated the inspiring stories of six heroes in the rare disease community.

K.C. McAllister:

I am honored, today, to be joined on The Mix Tape by one of those amazing heroes, Ryan Sheedy. Along with his son Reynolds, Ryan is part of the dynamic duo living with Costello Syndrome and working to make an impact on the rare disease community with the upcoming launch of My Mejo, an online platform form to capture, curate, and communicate important health information and records for caregivers in rare disease.

K.C. McAllister:

In addition to his roles as entrepreneur and primary caregiver for not only Reynolds, but his other two children, as well, Ryan has created quite a following with his creativity and humor on his @dadhappens Instagram account. Trust me when I say, it’s definitely worth a follow. Ryan, thank you for being here and welcome to The Mix Tape.

Ryan Sheedy:

Thanks, K.C. I’m really excited to be here and really honored that you guys have chosen our story to talk about today.

K.C. McAllister:

Well, there is so much that we could talk about today, and a lot of area that we definitely want to cover, Ryan. It would be great if we could start by starting at the beginning. If you wouldn’t mind, could you share with our listeners how rare disease became a part of yours and Reynolds, story?

Ryan Sheedy:

Yeah, for sure. The beginning starts at the first ultrasound when my wife and I found out we were having twins, and that really took us for an interesting start to this journey. At an early stage, we learned really quick that we were not in full control. Throughout that journey with having twins, we got really excited. We learned all about twins. My wife actually had to go into the hospital two weeks before birth with some preeclampsia, and when the boys were born, there were multiple complications that kept us in the NICU.

Ryan Sheedy:

Something seemed a little bit different with Reynolds, and they weren’t really sure what was going on. They did tons of testing. We went back and forth to another children’s hospital. We came back, and then ultimately we spent over a hundred days in the NICU meeting with various doctors, having tons of different procedures and surgeries, and kind of having that “We’re not really sure what it is, but there’s definitely something.” We just clipped away and took care of the things that really needed to be taken care of right then, to keep him alive and thriving, and to ultimately get us home.

Ryan Sheedy:

That journey took about 18 months to get him fully diagnosed with Costello Syndrome. I’ll never forget the call that we often call “the call,” where the Genetic Counselor gave us the results to the whole genome study, and told us that Reynolds had Costello Syndrome. We knew nothing about it, and when they told us that he had Costello Syndrome, they asked us if we had questions, and I said, “Yes, about a million.” We were left with the internet to understand and educate ourselves about this ultra-rare disease, or syndrome, called Costello.

K.C. McAllister:

Wow, that’s fascinating. I know I’ve read about 70% of all rare diseases, genetic rare diseases I should say, appear in childhood. Is an 18-month path to diagnosis, is that typical? I say that with air quotes, if you could see, right.

Ryan Sheedy:

Yeah, we’ve learned to remove the word typical, and normal, out of our vernacular now because we have that rare diagnosis with Reynolds, but it’s all over the board. Some people are diagnosed very early on. Some people are diagnosed after a year or two, I’ve met, what I call, some of the pioneers of Costello Syndrome, who went 18, 20 years before they got a diagnosis.

K.C. McAllister:

Oh, wow.

Ryan Sheedy:

Costello wasn’t even really named until the late ’70s, and so getting that diagnosis in 18 months, to some, seemed like a very fast track. To us, it seemed like a really long track. One of the interesting things about getting diagnoses of ultra-rare diseases is everybody becomes a pioneer some way in their journey.

Ryan Sheedy:

It was an interesting story. Reynold’s primary NICU nurse who took care of Reynolds in the NICU, actually had a child about a year after Reynolds, and she recognized Costello because she had treated Reynolds. She brought it up to the doctor and said, “Hey, this child looks similar to a kid that I took care of last year. He has Costello.”

Ryan Sheedy:

Sure enough, they tested this little child, and she had Costello. Part of Reynold’s journey helped another child get a diagnosis.

K.C. McAllister:

That’s incredible.

Ryan Sheedy:

It’s part of the journey that we’re now on, because we meet so many different people. That’s part of what I try to do is talk to other folks and give outreach, and be that listener to folks, and tell them interesting things are about to happen in your life that you never thought. We’re just glad to meet those folks that get that diagnosis.

K.C. McAllister:

That’s amazing. Okay, so you get the diagnosis, obviously, as you said, left with Google, what is, other than being an ultra-rare disease, what is Costello Syndrome?

Ryan Sheedy:

Costello syndrome is a genetic mutation. It was not passed from my wife, Ashley, or I, and it is just a happenstance. The stars aligned during conception, and he grew in utero with Costello. Interesting enough about Reynolds, Reynolds is a twin. He has a brother, Campbell. A lot of times, kids with Costello who are conceived as twins, the non-Costello kid does not make it, because the child with Costello puts such a strain or stress on the other child, and they take over, so they don’t make it.

Ryan Sheedy:

That actually makes it even more special that Reynolds has a companion for life, a brother, someone who goes along with his journey, but who is completely opposite of him. They push each other every day, and it is something special that we get to be a part of.

K.C. McAllister:

Yeah, that’s really amazing. Here you are with an 18-month old set of twins, and a diagnosis, but you and Ashley, your wife, were both professionals. How did that impact your family life at that point?

Ryan Sheedy:

Yeah. That’s a great question. We learned to go with the flow very early on, especially being in the NICU. Coming from the business world and very process-driven and oriented, and worked on timelines and deliverables, it was, “Well, how long are we going to be here? When is this going to happen?” We learned very early on, these things take time. Doctors practice medicine, and their job is to collect clues, and through the process of elimination, get to a diagnosis, or treatment.

Ryan Sheedy:

We spent the better part of three months separate; she was with Campbell at home after he got discharged from the NICU, and I was 200-plus miles away in a NICU with Reynolds. We learned very early on to adapt to the situation, go with the flow.

Ryan Sheedy:

When we first brought Reynold’s home, we had some help and this person took care of the boys. One day decided that she was going to move on, and crazy things happen right, during this times. Ashley was up for promotion. My job was struggling, because I was in sales and I wasn’t able to put the effort in that I needed to because of being a caregiver, and parent, to these two young boys.

Ryan Sheedy:

I said, “I’ll step in, Ashley. You take that promotion. How hard can a stay-at-home Dad really be?” I eat those words on a daily basis, because it is extremely tough. My mother and my mother-in-law who were both stay-at-home parents, just kind of chuckle because it takes a lot to be a stay-at-home parent. Taking that role as a stay-at-home dad, and being the primary caregiver, and going to those doctor appointments, and trying to figure out things, was kind of a new area for me.

Ryan Sheedy:

Prior to children, when I got sick, I took Advil. I knew nothing about medicine, I knew nothing about healthcare. I got squeamish at a paper cut. Now, I’m Reynolds’ caregiver, talking with these doctors, trying to understand what these doctors were saying, and then communicating it back to Ashley because she couldn’t be at that doctor appointment because she was on a business trip, or in a meeting.

Ryan Sheedy:

That was really scary for me, because it was something that was unchartered territory for me. I had to learn very quickly, because this little kid, these little kids, needed me and they relied on me, and they couldn’t tell me all the time what was wrong, and so I had to anticipate what they needed. It was scary and it’s hard.

Ryan Sheedy:

Sometimes being a dad at the doctor’s office, or at the hospital, you get kind of like, “Are you okay? Do you need help? Is mom coming?” To now, fast forward four years, is people come to me and ask me questions. That’s really cool. I often talk to other caregivers and parents to say, “It’s extremely tough, but you can do it, and the kids rely on you.” That’s something that they don’t teach you in the birthing class, is what happens after the birth. Life goes on and you figure out ways to make things happen.

K.C. McAllister:

No, that’s interesting. You just mentioned, that initially it was, “Do you need help?” because you’re the dad. Not only a stay-at-home parent, which has its own set of unique challenges, especially when exiting the workforce to take on that role. Then, being a dad in that capacity, and one dealing with a child with a rare disease, it sounds like it may have been a little lonely at times. How have you embraced that aspect of the role, being the stay-at-home dad or being the dad as the primary caregiver, versus what people perhaps expect with the mom.

Ryan Sheedy:

Yeah. Ash and I are completely role reversal. She’s the career person, she’s very driven, and she’s in uncharted territory too, because she’s the mom, and she’s the nurturer. She gets like, “Well, where’s mom,” too. It’s a unique perspective, but coming from the dad side of it, I liked it and it was great.

Ryan Sheedy:

In the beginning, I felt like I wasn’t really contributing and participating, because the traditional role of the husband is to go out and provide for the family. I struggled with that. Am I really providing and giving all that I can? Fast forward to today, I full on 100% embrace this role, and I love it. I’m not going to say it’s easy, and I’m not going to say it’s not hard.

Ryan Sheedy:

It’s not pretty all the time, but I get to help shape my son’s lives. We talk about the twins, but we also have a 14-month old Mack, who entered in into our lives, so that brings its own challenges. It’s interesting. My goal, prior to children, was to become a CEO. I aspired to be the head honcho, the guy who was making the decisions, the leader; and now I get to be the leader of three little kids who are the future of society. That’s kind of scary for me, but I try to do it in a way that’s fun, that we share our experiences. I try to use platforms like social media, and so forth, to show that you can have fun too, when you have a special needs, a rare, medically complex, kid. My role now is dad first, caregiver second, and now founder of a startup.

K.C. McAllister:

That’s pretty incredible. I do want to reference, because you said, “we have fun, and I get to share that out.” I did mention your @dadhappens Instagram account. Again, I do really encourage all of our listeners to go check it out. You’re not going to believe the stuff that Ryan does with these kids. It’s pretty incredible. Help us understand again, so that’s been a unique take on your circumstance, in using this platform. Where did these ideas come from? You were in sales, I would’ve thought you were in marketing. All of this creativity and humor and fun, what has inspired that and to keep a part of your lives.

Ryan Sheedy:

Yeah. Prior to being a dad, I’ve had tons of different role. Marketing, advertising, sales, fundraising. No one ever told me that I was organized, and that was a skill that I had to learn very quickly with having multiple children and a startup, and managing Reynolds, what seems like, a hundred different doctors, and different medications, and so forth. A lot of being a stay-at-home parent beyond going to the hospitals, is being at home. I look at being at home as my toolkit, and I just look at things and I’m fortunate enough to have a little bit of creativity, and a vision, and these ideas just come.

Ryan Sheedy:

I love the Masters, and I want my boys to love golf. I have a friend who his company has these caddy suits. I came up with the Daddy Caddy and for the week of the Masters, I wear a caddy suit everywhere I go. This is the third year running. The doctors know I’m going to come in my caddy suit on Master’s week, or, we have fun at the park, or we create.

Ryan Sheedy:

I get inspired every day by watching the news, or looking at other rare disease parents, moms, dads, on what they do and, hey, it’s the Mars landing today, so we create a Mars Rover, or during quarantine we actually went through isolation, I came up with the Ice-olation games for my son and I, because it was Olympics week. We got a box and we created a ramp with some foam blocks, and we went block sledding.

Ryan Sheedy:

Some people can roll their eyes at it, because it seems like silly and whatnot. My whole goal is, if I could make one person laugh, or smile, or shake their head, that’s the goal.

Ryan Sheedy:

We’ve been fortunate enough to get picked up by Some Good News with John [Kizinski 00:18:39], because we did a risky business dance. I just want to show people we can have fun, and everyday life doesn’t have to be pretty or hard. It just takes a couple of seconds. Hopefully one day when the boys look at some of these embarrassing moments, they’ll think, “Man, my dad was cool, and I’m glad that he captured these moments for us.”

K.C. McAllister:

Absolutely. Well, if you check out, again, his Instagram you’ll see the faces of those boys and they seem to think that you’re pretty cool, and they definitely look pretty happy right now. It’s very well said.

Ryan Sheedy:

Those are the good takes.

K.C. McAllister:

Yes, right. Exactly.

Ryan Sheedy:

Sometimes it’s like “Take two,” or there’s a 100,000 pictures on my camera roll, but for the most part, they believe it.

K.C. McAllister:

That’s funny. That’s funny. Well, great. Again, talking about even going in your caddy outfit to the doctor’s office, that’s a huge part of your lives just based on having Costello Syndrome with your family. To that end, let’s talk about My Mejo. What is it, Ryan, and what inspired you to have this startup?

Ryan Sheedy:

Yeah, so Mejo is a tool that we created to help caregivers, specifically caregivers of rare disease, medically complex children, because we know firsthand that having a child like Reynolds, there’s a lot to keep up with; there’s a lot to remember. You get asked a lot, “So, tell me about your son,” and you have to repeat yourself a lot. I actually had this idea being in the NICU, because we were meeting with so many different doctors and I had to relay information back to Ashley and other family members. I was creating PowerPoints, because I’m a sales and marketing guy, I was creating PowerPoints and sending them out to different people. Then over the next year, I started creating my own documents so I can pass out to the doctors and nurses, that talked about his medications, and his conditions, and all of that.

Ryan Sheedy:

One of the things I really wanted to communicate in these one-sheets were, yes, Reynolds has Costello Syndrome, and yes, he’s medically complex, but he also loves the color green. He loves Blippi. He loves to give high fives, and he is a twin, and he’s got a G tube.

Ryan Sheedy:

I found that a lot of medical record platforms didn’t have that type of information in there. Yes, the medications and conditions are critical, but how do we humanize the data and make a child more than their diagnosis? I created these little PDF documents, and I pass them out to doctors, and they thought, “Man, this is really cool. Where did you get this? I need this for all my patients,” you know, “this would be a great tool to empower patients with their information.” In the beginning I was very flattered, and it was cool and I’d come home and tell Ashley like, “Oh my gosh, four doctors loved it, and blah blah,” to, “Hey, let’s try this thing. Let’s get a startup going.”

Ryan Sheedy:

We created a beta, we bootstrapped this thing, and we got some really great feedback. A couple months ago we decided to make it a full blown app, a web app, where people can log on and save their information, and share it with grandma, and so forth, but because there’s so much to remember, and I wanted to humanize it, I wanted to create a platform that spoke to the caregiver; not it was designed for the doctor, that the caregiver got to use.

Ryan Sheedy:

I would hear all these words, and see them on websites, talking about medical platforms have silos, and they’re fragmented, and interoperability, and cohorts, and exchange. Most people aren’t in healthcare, and that doesn’t mean anything to them, and so we want to create a platform that’s simple, that’s human, that cares; it empowers caregivers, and is useful in those situations that I explained, and it didn’t exist. We wanted to create that so that people like us had something to share, and it’s really come in handy.

Ryan Sheedy:

We really want to talk about the “why” caregivers need these type of documents versus what it does. We’ve lived a lot of the situations and I’m excited to hear more of people of what they need and how they would use it. But, two of my favorite stories were we were on vacation in South Carolina, and Reynolds G tube fell out, and we had to go to a hospital, and they didn’t have any of his medical information. They asked a ton of questions. If I would’ve had to remember that information, I wouldn’t have had it. I knew on that piece of paper, it said when his G tube was fixed, what size it was, and all of his medications.

Ryan Sheedy:

The other time that we used it, Reynolds participates in a couple of multidisciplinary clinics. We had a day full of 10 different doctor appointments, and I sent them his Mejo as a pre-read, a business term, you don’t really use that in caregiving, but I sent it to them prior, so they can read up on Reynolds. Again, they have access to all of his charts, but this is a summary. I sent it ahead. They came in, and 10 out of 10 doctors came in and gave Reynolds a high five, 10 out of 10 said, “Hey, I heard you love Blippi.” That was so powerful that one, they read that, and two, it made him feel a little better about being at that appointment. They would’ve never known that, if I didn’t send that.

Ryan Sheedy:

Our whole purpose is to simplify, and humanize this medical data. I’m not sure where it’ll go, I have big aspirations, but I know deep in my heart that it’ll help a lot of people like us.

K.C. McAllister:

That’s incredible.

Ryan Sheedy:

That’s our goal with this app.

K.C. McAllister:

Absolutely. Thank you, Ryan, for sharing those stories, because I think that really does explain the impact and the opportunity with this kind of data and turning it around to be more about the person, and less about the diagnosis. At the same time, I know you had shared a picture with me, and then talked about needing to pull some of his records from one doc, and it was taller than Reynolds, you said, the stack of paper. From that perspective, how can My Mejo help people just warehousing that volume of information? Or, can it do that yet, or is that aspirational in terms of what the platform could become?

Ryan Sheedy:

Yeah. That’s totally a possibility someday, but we’re not trying to get into the medical record, vertical or industry. I mean there are a lot of great companies out there that hopefully one day will be able to partner with it. But our whole goal is just to summarize and create usable documents.

Ryan Sheedy:

The story that you reference, as parents of a medically complex kid like Reynolds, you fill out a lot of forms, and there’s a lot of different documents, and he needed some medical records for one of the things that we were applying for. The woman emailed me and said, “Do you want his records?” And I said, “Sure, put them in the mailbox.” She said, “I can’t.” I said, “What do you mean?” She said, “Well, I’ll have to meet you to give them to you, because it’s 7,000 pages.” She said that is the largest…

K.C. McAllister:

7,000 pages.

Ryan Sheedy:

7,000; and it was literally taller than Reynolds, because I took a picture of him standing beside it. I thought, yeah, that’s great to have as a reference. We often talk about those medical platforms being the library, we’re like the Dewey decimal system, the quick and easy facts that a caregiver would need to give grandma, or to a babysitter, or to a new doctor. Our focus is to keep it super simple, because parents have so much going on in their lives to create something that is a one stop shop, isn’t what we’re trying to accomplish in the beginning.

K.C. McAllister:

Okay. That makes sense. That’s great to know. So it’s a tool that they can use. I would’ve said cliff notes, right? Obviously, that was my college experience.

Ryan Sheedy:

Me too, that’s why you say that. That was my initial thought of how do we create something that’s the cliff notes. Obviously, you can’t use the cliff notes wording, and things like that. It’s interesting to coming up with a name, Mejo, finding a name for a company is harder than naming a child.

Ryan Sheedy:

Trying to find one that doesn’t exist or make sense. My wife, being the marketing genius that she is, we whiteboarded a lot, and we came up with a bunch of different names, and they got shot down because they were taken, or people didn’t like it. One day she said, mejo. I thought, huh, because it stands for me journey, but it also stands for medical journal. If you pronounce it Meho, it means better. It’s literal, but it’s not. Hopefully one day people will just use it as a verb. Like, “Oh, I Mejo’d it. Or, I got my Mejo. We’re really excited about the brand that we’re putting out there, and hopefully it’ll resonate with a lot of people.

K.C. McAllister:

Wow. That’s incredible. I know we’ve talked about too, Ryan, that you are a part of a community, right? So, recognizing Costello Syndrome itself is ultra-rare, obviously a few number of patients globally, but the rare community, part of what we celebrated in February, in honor of Rare Disease Day, is just that, right? That 5% of the world has a rare disease, and 300 million people are living with a rare disease. Every diagnosis is the person, that’s individual, it’s a unique experience. However, you are a part of a community. Mejo obviously is going to help create an opportunity for that community to have this information accessible and shareable. What are other ways that you have been able to find community throughout this experience as a parent of an ultra-rare child?

Ryan Sheedy:

Yeah. Community is a great word, because when we got the diagnosis, we automatically looked up Costello Syndrome, and we found the Costello Syndrome family network. Within 24 hours, someone contacted us, and so we learned a lot from those parents because there’s not a lot of research, or medical data, around these, these kids who have ultra-rare. That was really welcoming in getting to meet other folks.

Ryan Sheedy:

There are so many of different platforms, and prior to having a child who has an ultra-rare disease or syndrome, I didn’t really know much about it. When you start peeling it back, and asking questions, and looking for it, there are tons of people out there. It’s amazing what companies, like Mix, is doing to promote what rare disease is doing, and talking about it, and having a conversation because it affects so many. A lot of these kids, and that’s our focus with Mejo, is kids in the beginning, pediatrics, they could be the first one.

Ryan Sheedy:

So their parents are left with, how do I find information? How do I connect? Just having that conversation and talking with doctors… We’ve been very fortunate with Arkansas Children’s Hospital, and the care that they give. We got very lucky with finding a pediatrician who became a friend, became a partner, who became a believer, who ultimately is an investor now in Mejo. I often talk about that partnership of when you’re an advocate, and you’re a caregiver creating that partnership.

Ryan Sheedy:

Ash and I coined this 3A’s thing called Ask, Advocate, and Adapt. We try to push that out to other caregivers. Ask, Advocate, and Adapt really stands for, and I’ll put a dad spin to this, ask like you’re a four-year-old. I have four-year-olds ask me questions all the time, and the immediate response is, “because I said so”, and maybe “because that’s how we grew up”, but now it’s, “they’re just curious, they’re asking questions. They’re not really sure, this is new to them.” That’s very relatable to being a new parent caregiver of a child who has a rare disease, and so ask questions. There should be no dumb questions in this.

Ryan Sheedy:

The next part is being an advocate. If you find a provider, or a doctor, that gives you the look of, “because I said so,” move on, find somebody who will partner with you, who, because there is not a lot of information out there, will be receptive to you bringing that information to the table.

Ryan Sheedy:

Then, the last part is adapting. Getting that diagnosis was very tough in the beginning because we now, after 18 months, have the reason, the root cause of all these things that are going on, and yes, we had a diagnosis, but our whole lives will change because of what Reynolds will go through in his journey.

Ryan Sheedy:

Somebody sent me this poem about going to Holland, and I really suggest people with rare disease and medically complex children read this poem. It ultimately talks about being prepared to go to Italy, and you do all the reading, and you’re so excited to go to Italy, and you fall asleep on the plane, and when you wake up, the pilot says welcome to Holland. You’re like, “Wait, I didn’t want to go to Holland. I wanted to go to Italy.”

Ryan Sheedy:

If you are so upset about not going to Italy, and you don’t see the good and the amazing that Holland has to offer, you’re going to miss out. Perspective has been something that smacked me across the face since the beginning. I had this thought that I get to go to Italy, and I get to go to Holland, because of my kids. I’m grateful for all the people that I’ve met through this journey that I would’ve never met if I didn’t have a child like Reynolds.

K.C. McAllister:

Well, that is a beautiful perspective, and clearly I think is a great way to explain why we at Mix were so touched and inspired by you as a super dad. You as super husband, and parent, and advocate, and now entrepreneur for this really cool tool, My Mejo, that’s launching. So glad to have you here today.

K.C. McAllister:

Before I do let you go, Ryan, a couple of things we ask all of our guests here at The Mix Tape, the first being, what is the best interview question that you’ve ever been asked or have asked?

Ryan Sheedy:

That’s a good one. I think this one, because it could be loaded, “Tell me about yourself.”

K.C. McAllister:

Okay.

Ryan Sheedy:

Because I’m Irish, and I could talk forever. One of the things that my wife brought up to me when we first started to date, was that she called me a people collector. I often say, when somebody asks me, “tell me about yourself,” I say “I collect people,” and people say, “what does that mean?” I say, “Every conversation that I have with somebody will have a use, whether it’s for you, whether it’s for someone else.”

Ryan Sheedy:

The power of the word, hello, is amazing. I don’t ever forget that. I try to teach my kids to just say hi to somebody, because maybe it makes their day if they were having a bad day, or it might lead to a co-founder like I did with [Brett Condecac 00:36:14], who has joined our team recently. It started with hello. That’s how I answer, “tell me about yourself.”

K.C. McAllister:

Tell me about yourself. That’s great. I love it. Okay. The other big question is, because we are The Mix Tape, we always have a Spotify playlist. What is your favorite song that we should add to our Mix Tape Playlist?

Ryan Sheedy:

I would be remiss if I didn’t get to ask, because this is for the dynamic duo, can I have two?

K.C. McAllister:

Of course. Yeah. We probably are going to all like Reynolds better than yours, but…

Ryan Sheedy:

Probably, and it’s actually all of my boys’ favorite song, and we play it a lot in the car, but it’s Geronimo.

K.C. McAllister:

Yes.

Ryan Sheedy:

I can’t even remember the band name. I think it’s [Say Hay So 00:37:10] or something.

K.C. McAllister:

Okay.

Ryan Sheedy:

But they go crazy, and they scream it, and I love it because I actually looked up who Geronimo was, and Geronimo actually was a medical doctor who forged ahead, and the airborne says Geronimo when they jump into battle, because they don’t know what they’re getting into, and it’s funny how it’s full circle that’s that’s what we’re trying to do is forge ahead and be different, and go into this unknown.

Ryan Sheedy:

My favorite song has also come full circle, is Father and Son by Cat Stevens.

K.C. McAllister:

Oh my goodness. That’s a tear-jerker.

Ryan Sheedy:

I’ve been listening to it a lot lately, just to ground myself, but I’ve always loved it. I’ve listened to it because it reminds me of my dad. I listen to it because I became a father, and I listen to it now a little bit closer to the words. There was a line in there that says “from the moment we were born, we were ordered to listen.” I don’t agree with that, because I think kids need a voice, because we can learn from them so much.

Ryan Sheedy:

The four-year-old why, why, why curiosity to me is amazing. That’s something that I try to push and instill in my sons, is just be curious, and ask the questions. Sometimes it gets annoying, because they ask questions and ask why all the time. They’re just full of space in their brain, because they’re constantly learning.

Ryan Sheedy:

Father and Son, to me, is one that I can put on repeat.

K.C. McAllister:

That’s amazing. Me, too. Yes, it does always bring a tear to my eyes. Just such a great… And as a parent, it does definitely take you to the next level.

Ryan Sheedy:

I hope you get to put all of these on a Mix Tape.

K.C. McAllister:

Yes.

Ryan Sheedy:

Would love to have that from the others in the podcast.

K.C. McAllister:

Oh, absolutely. We do have, from first season as well, it’s on Spotify. You can look it up, follow us, obviously, wherever you listen to your podcast, but thank you, Ryan Sheedy, for being with us today. Again, as I referenced, check him out on Instagram on @dadhappens, and also check out My Mejo at mymejo.com. So, M-Y-M-E-J-O- dot com.

K.C. McAllister:

Again, thanks Ryan so much for being here at The Mix Tape. You are truly a rare hero.

Ryan Sheedy:

K.C., thank you so much for having me.

Valerie McCandlish:

Thanks so much to Ryan and K.C. For being our guest this week. I think that there are so many takeaways that we can draw from this episode. I don’t even know where to begin. All the things that I want to say, but first, what really stands out to me is how life around you doesn’t stop when your family is living with a rare disease. We get to see this firsthand account from Ryan on how they really needed to explore these uncharted waters as they decided what would be best to support their family. Part of that included upending these parental stereotypes that we are really familiar with in society.

Valerie McCandlish:

Ryan stepped into that stay-at-home dad role when his lifelong goal, up to that point, had been to be the CEO, to lead a company, be the decision-maker. I really enjoyed his perspective that he still really reached that point in his life, and just on a smaller scale, but the decision-making is probably infinitely more important for his family than whatever role he might have stepped into as a true CEO.

Natalie Taylor:

Right. I love that point, Val, and what’s really interesting is everyone is a pioneer at some point in their story when you’re living with a rare disease or an ultra-rare disease. We heard that in last week’s episode, similarly with Emma and Justin, that upon diagnosis, you’re left with the internet, and that happened with Ryan’s family, too. That can be scary. I think they’ve done a phenomenal job of navigating this diagnosis, and connecting with their community, and how remarkable that part of Reynolds’ journey helped to get another child all diagnosed.

Natalie Taylor:

I thought that was pretty remarkable, but also really touching is Ryan’s efforts to humanize treatment, and to make these children going through something like this, feel like a kid, and their doctors can come in and give them a high-five and relate to them, and maybe make it a little less scary and less daunting to go to, I’m sure so many doctor’s appointments all the time. That community connection between patients and patient’s parents is a special thing in a difficult time.

Valerie McCandlish:

Definitely. Probably the biggest takeaway for me here is that we have listened to this story from Ryan, from Emma and Justin’s story last week, who have been hit with probably the hardest decisions that they’ve ever had to make in their lives. Instead of it ending there for them, they’ve gone on to just go do something better, not only for their families, but for other families that are going through something similar.

Natalie Taylor:

Right.

Valerie McCandlish:

You get to see such a community connection. This place that’s built for others who maybe didn’t have one, otherwise. That’s so inspiring for us to know that people who have just everything stacked against them, are doing the most out here to make life a little bit easier, and a little bit better for others.

Natalie Taylor:

It’s very inspiring. I feel so lucky that we have these awesome people in our network to learn from.

Valerie McCandlish:

For sure. As a reminder, you can visit Mix Talent LinkedIn page, and our website, to see Ryan and Reynolds’ story, to see Emma and Justin’s, as well as the several others that we’ve highlighted from your disease month. If you want to follow Ryan’s Instagram page for his hilarious dad content, that’s @dadhappens. If you want to see more about his startup that helps caregivers, that’s again Mejo, which is M-E-J-O.

Natalie Taylor:

Additionally, we have two awesome songs to add to The Mix Tape playlist. Of course, we can add one for Reynolds and his brothers, which is Geronimo, which what a cool story. I love that he looked it up and connected that to his family. That’s so cool.

Valerie McCandlish:

Yeah.

Natalie Taylor:

We will be adding that to the playlist. As a reminder, you can find The Mix Tape Playlist on Spotify, and follow along every Wednesday for new episodes of The Mix Tape Podcast, launching every week. As always, thank you for being in the mix. We’ll see you next week.

 

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