Turning Heartbreak Into Action, with Rare Trailblazer Megan Nolan

Transcript

Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I Don't Know How You Do It” podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I'm so glad you're joining me on this journey and I hope you enjoy the conversation. 

Welcome back to the show. I am so glad you're here. If you want to learn more about the guests on this podcast and follow along on my book publishing journey, make sure you're signed up for The Fein Print at Jessicafeinstories.com. That's Jessicafeinstoris.com. 

Now on to today's episode. February 29th is Rare Disease Awareness Day. So as we kick off the month, I am thrilled to bring you somebody who's making a [00:01:00] significant impact for families affected by rare disease. And by the way, that's a huge number of families. There are 25 to 30 million Americans living with the rare disease, and two thirds of those with the rare disease are children.

Today's guest, Megan Nolan, is making a huge difference for those families. Megan was previously a senior executive in marketing and advertising in New York, focused on luxury goods. She worked at Prada, Vogue, and with clients including Apple, Nike, Louis Vuitton, and Chanel. 

When Megan's son, Domenico, was born, Megan's world stopped spinning as she searched for an answer to a host of overwhelming medical symptoms.It would be 16 months before Domenico was diagnosed with FoxG1 syndrome. Just three months later, Megan and her husband launched the Children's Rare Disorders Fund to fund research for a cure. And then, nearly one year to the day later, she launched the online magazine RareParenting.com to help parents of children with disabilities.

One of the parts of the site I particularly [00:02:00] love is called For the Ally. It's full of great advice for people who want to show up in a meaningful way for their friends and family members who are impacted by rare disease. Megan's story is one of resilience, devotion, and truly making a difference, and we dive into it all.

Without further ado, I bring you Megan Nolan. 

Jessica Fein: Welcome to the show, Megan. 

Megan Nolan: Thanks, Jess. I'm so happy to be here.

Jessica Fein: I'm so happy to have you here. Let's start off by hearing a bit about your family. 

Megan Nolan: Sure, yes. So, we started a bit later in life. Our firstborn is named Domenico, and he's three years old now. It was quite a difficult situation in the early months into the first year of his life, but eventually he was diagnosed with FoxG1 Syndrome.

And then we also have a second little boy named Giorgio, and Giorgio's a year.

Jessica Fein: Tell us a little bit about that syndrome. How did that manifest, and how did you ultimately get that diagnosis? 

Megan Nolan: As a new mom, it's [00:03:00] difficult, I guess, sometimes to understand when something is definitely wrong with your child because you don't have much to compare it to.

However, we knew something was wrong. And we went to a number of doctors because he wasn't really making eye contact initially. And then he wasn't rolling over. And then he wasn't sitting up. And so we went to many pediatricians actually. And I guess as a new mom, they also see you sort of as a new mom. So I think they do get a lot of worried parents coming in.

And so their first reaction is usually kids can be developmentally delayed and crying is normal. Maybe it's just colic. This wasn't colic. This was six to eight hours of crying every day. This was completely sleepless nights. I mean, he wasn't sleeping more than three or four hours at a time until he was a year old.

So it was very, very tough. And we did see a number of doctors, but we didn't really get any answers. I was kind of at my wits [00:04:00] end, I guess you could say. I read every book out there. I couldn't get him to eat. He wasn't going to the bathroom properly. He was having a lot of pain and constipation. I watched YouTube videos.

I paid for online courses. I did everything a good mom would do to try to understand what was going on with him, and I just wasn't really finding any answers. And it wasn't until he was 14 months old when we actually went in for surgery. So he had severe strabismus. Strabismus is when your eyes are crossing.

At the time we were living UK they call it a squint. But here in the U.S. it's eye crossing or lazy eye sometimes it's called. And his was quite severe and of course I read every book about strabismus too. And what I found out about strabismus is that It can impact the child in ways that you wouldn't really imagine.

It can affect their depth perception. It can actually create double vision. So we thought, if the doctors are telling us that this could just be a developmental delay, then maybe it is related to his eyes. And [00:05:00] maybe if we do eye surgery, then he'll begin to push up, he'll begin to sit up. It was kind of like we were grasping for straws, I guess you can say.

So we went to CHOP in Philly. We found a great doctor, and he performed double eye surgery on Domenico. And about two days later, when we were there in the hotel in Philly, he began his first seizures. So it was there at CHOP when we saw a great neurologist who said, Okay, based on your history and these seizures, it is possible he has a genetic disorder.

Now this was like, obviously crushing and a whirlwind of emotions, but the biggest learning here, I think for us, was that genetic diseases can be non inherited. And this is something that, as well studied as we are, this is something that we hadn't really understood before. My husband and I are both healthy, we did all of the genetic testing on ourselves, and so we didn't really understand that genes can mutate in Domenico at or [00:06:00] before conception that have nothing to do with our genetic makeup.

And this is essentially what happened to Domenico. This kind of mutation is called the de novo mutation, and it can produce a child with a genetic disorder, a non inherited genetic disorder. And so that's what Domenico ultimately was diagnosed with. So at 16 months, we received his FOXG1 diagnosis. 

Jessica Fein: It's such a diagnostic odyssey, which we hear from so many parents, you know, and so for 14 months up until the surgery and the seizures and then ultimately the diagnosis, you're going to doctor after doctor, after doctor, they're saying, no, it's fine. It'll catch up. You must've been questioning yourself.

And meanwhile, you're not sleeping because your baby's not sleeping. Were you still working during that time? I know you had a very big career before this. 

Megan Nolan: Thank you. Yeah, I really enjoyed my career before Domenico was born. I worked in marketing and advertising here in Manhattan with some of the best brands in the world from Apple and Nike to Louis [00:07:00] Vuitton and Prada and Chanel and so on.

I liked my job, but Domenico required serious care from the get go. The funny thing is, I remember when I hit that three month mark, because I intended to go back to work, right? When I hit that three month mark, I thought America was crazy. I thought, how on earth could anyone allow their child to go into daycare?

Because it's still true, it's still a little silly that there's only three months allowed in America when other countries have a year and so on. But the state that Domenico was in, and because I was being told by everyone that he's fine, I couldn't imagine passing him off to anyone. I literally felt that the whole system was absolutely insane.

And of course it was because he wasn't quote unquote normal. He wasn't sleeping normally, eating normally. He wasn't in a place where anyone else could take care of him, especially since I still didn't know what was wrong with him, right? So I elected to stay home. And so that was a choice. I put my [00:08:00] career, what I thought was maybe on hold, in order to take over care full time.

And it was hard, yeah. Sleep, like you said, I think that's the thing that most people don't really understand about neurological disorders, particularly neurodevelopmental disorders. Neurodevelopmental means that the child's showing symptoms at birth, whereas neurodegenerative is when the child isn't showing symptoms until later, and that means they're usually appearing perfectly healthy and fine, and they begin to lose skills, right?

Jessica Fein: My Dalia was the second. So she was running and jumping and developed those skills at a normal, typical, I should say, at a typical age, and then began to lose. 

Megan Nolan: Which is another form of crushing. Cruel. Cruel. It's completely cruel. But with neurodevelopmental, so what a lot of people don't know about dealing with a child with a neurodevelopmental disease is that in those, you know, early months and years, the lack of sleep is military grade.

I mean, it is meant for [00:09:00] torture, really. And, you know, my husband was working. Obviously, his sleep was prioritized. And I remember having him take care of Dimenico, like, one night here and there, and he couldn't handle it. He couldn't even handle, like, one Friday or Saturday. And so I went a good two years straight on zero sleep.

However, he's gaining sleep now. So with him and with other kids with FOXG1, and I would imagine many kids with neurodevelopmental diseases in general, he gains about an hour every six months, right? So first he started with two hour stretches, then three hour stretches, then four hour stretches. Right now his sleep averages around a six hour stretch.

So some nights he might have a four hour stretch, some nights he might have a seven hour stretch. My husband now takes him every weekend. I think now that he's sleeping a little bit better, it's a little easier. For my husband, but he takes him every weekend, which also just provided a huge relief for me.

And I think it's really, really important for people to understand the sleep situation, [00:10:00] especially for parents of healthy kids. A lot of friends of mine, you know, they try to relate, but you can't relate your kid waking up in the middle of the night because he has to use the bathroom to my kid who never sleeps.

And you can't relate a newborn stage to my kid, because it's almost like my kid is forever a newborn, you know? And so I've always appreciated friends who try to relate, but sometimes it can feel like they're not really understanding what I'm saying. They're not really getting, like, this is another level.

The thing I always say about caregiving in general is that it's like we were given this new job without any training. One day we were just told, you're a caregiver now, and we choose to be caregivers, right? It's our kid, we love our kid. But you're a caregiver now, and here's this kid that you have to, you know, keep alive like any parent does.

But they come with all of these complications, and we're not going to tell you what the complications are. They're just going to hit you in the face one at a time, and it's going to be your job to figure out [00:11:00] what they are and who is best to help you treat those symptoms. And that's basically what it is, which is a ridiculously hard life, you know.

Jessica Fein: I do know. I totally, totally relate to that. And I remember feeling like when people have typical kids and they're exhausted and everything's new, you have like an older sister or best friend or a neighbor, people come and they say, let me watch your baby. Let me change your baby. Let me feed the baby.

They know, they descend on you and they help and they get it and it's all what's to be expected. And I don't know about you, but I felt like not only were we expected to take care in a situation that was quite literally life and death every minute, we not only didn't have the training, we didn't know where to turn because so many doctors were puzzled by it.

Megan Nolan: Yeah, and that's really what our experience was, you know, each time we had a problem, we would first go to our pediatrician because that's your first line of defense, the pediatrician wouldn't really have answers, [00:12:00] then we would go to our neurologist, but the neurologist can't really help you with a GI issue.

They can refer you to a GI doctor, but they can't really help you. And so actually where we would consistently find help is with other parents, because online there was nothing. Acid reflux, for example, you can find plenty of articles about acid reflux, but you can't find anything about what acid reflux looks like in a kid with a neurological disorder.

It looks completely different, and it almost looks seizure like in the middle of the night. And that's something that most doctors don't recognize, right? We took him one time to the emergency room with what turned out to be acid reflux. And I remember the emergency room attendant telling me it wasn't acid reflux.

And I was already convinced it was, because I had first asked the parents and they told me that that's what it was. But they said that that's not what it was, and they wanted to do a whole battery of exams, and it was late, it was 6 o'clock, I just wanted to make sure he went to bed on time, because he doesn't go to sleep on time, a seizure may begin, so [00:13:00] we left, and we put him on over the counter acid reflux medications, and in two days, he was fine.

And so that was kind of our path, and our way of finding answers every single time. Every single time we had a problem. You can't expect doctors to know everything. Doctors know their specialties, right? So you end up developing your care team over time. Two years ago when we were diagnosed, I wish I knew I was supposed to develop a care team.

There are charities related to FOXG1 that list the symptoms, but no one's really there to say these are the symptoms, there's a high likelihood that your child is going to have all of them. In order to get ahead of the symptoms, start signing yourself up with every doctor. That's really the message I think that parents need to hear because if you were already signed up to a GI who is monitoring the child, then when you have an issue, you know exactly where to go and that doctor is going to give you a medication right away.

You know, because you would have met with the doctor, they [00:14:00] would have told you, okay, these are the symptoms that fall under me. If you see anything that looks like this, here's how to get in touch with me, right? And we didn't have that. 

Jessica Fein: So, you get this diagnosis at 16 months, and things change for you immediately.

Just three months later, you launch the Children's Rare Disorders Fund. 

Megan Nolan: Yes. 

Jessica Fein: That's amazing to me. How did you have the wherewithal to move to that kind of action so quickly?

Megan Nolan: Yeah, so, we really wanted to move even faster, but I think we first took a step back to try to understand what was already out there, who's already doing research, what's going on, and where do we come into this, how can we help move things forward, knowing that there were already efforts at play.

So, we moved forward as quick as we did, I think just because of that first 16 months. Going back to the sleep thing, we had moved to London before he was diagnosed. My husband is English and, you know, we were just coming out of COVID. He [00:15:00] wanted to see his family and I wasn't going back to work, right? So he wanted to take a job back at home.

We moved to London. We had great plans of, you know, Paris in two hours for 60 dollars on a train and we can go to Spain and my origins are Italian. I've been to Italy a number of times. I was so excited to be able to go to Italy whenever I wanted sort of thing. None of that happened because I was on zero sleep and really I became a recluse.

I became Someone who lived in a dark, dark hole and was completely dead to the world. I never went out, obviously. We went to bed early. We had to go to bed when Domenico went to bed at seven. So there was no, you know, date nights even. And it was just a very, very hard period. And, and I think when you go through that, especially when you're beating yourself up because you have no diagnosis and you don't really have anyone believing you that something is definitely, definitely wrong.

It was just a very dark, dark place that I was in. And once you [00:16:00] get that diagnosis, it's almost like as awful as it is, the fog lifts a little because now you can take action. Now you're like, okay, I know why this has been going on for so long. What can I do to change it? Because we cannot continue to live like this.

He's suffering immensely and I'm not sleeping and I'm not a good caregiver. As a result. I remember my husband and I getting into arguments because he was saying I wasn't taking him out for walks often enough. Taking him out for walks? I was barely showering. I can't go for a walk if I can't even get myself to go in the shower.

The best I can do right now is take care of him. I'm not even taking care of myself. I definitely can't get myself together enough. For us both to go outside into the public world, that's not happening. So it was, it was hard. Something needed to change, but what gets easier is having the diagnosis because then the rest of the world kind of begins to open up to you and you start to understand, okay.

Here are some symptoms that I know are related to [00:17:00] the disease. I definitely wasn't prepared for the new symptoms to come, but at least I had a better grasp of what was going on with him. 

And so, yeah, we started the charity because we needed to change it and we just felt like we could. We just felt like we're capable people, you know, I had run a couple of businesses before, so I just knew that it was something that I could handle.

And I have heavy experience in digital marketing as well, so I knew I could put together the website. It's just one of those where there's a will, there's a way situations. 

Jessica Fein: And what is the mission of the charity? 

Megan Nolan: Yeah, so we primarily just raise funds, we don't offer a community because there are already charities who manage the parents and offer the community, so we don't want to repeat a process that's working very well, so our only goal really is to raise money to contribute to FoxG1 research.

Our longer term goal is to pick up additional rare diseases, and that's why we've called it the Children's Rare Disorders Fund and not the FOXG1 Fund. The [00:18:00] reason for that is because we did have one neurologist who, at diagnosis, told us that no one was working on a cure and there wasn't much hope for a cure.

When we went back to the hotel that night, we found out that actually there is some FOXG1 research going on, and there's great hope for a cure. And I always just kind of look back to that day, what happens to all of the parents who go home that day and they Google and they find out the doctor's right.

No one's working on a cure. There's no hope for a cure. For me at that really dark period of my life, actively working on it myself and knowing that there are great researchers already working on it is what helped me to keep going. It got me up in the morning. It got me more capable and able. to take on the day and the day's challenges really.

That's as far as I can really look out, I think. But for all of the parents who wake up in the morning with no hope for a cure when they're in that dark space, I [00:19:00] don't know how they do it. I really don't know how they do it. It's crushing to me. And so when we began the charity, our mission was to find a cure for FOXG1, whether it's a gene therapy, a stem cell therapy, a repurposed drug, whatever it is.

And what our longer term goal is to then do is replicate successes on additional rare diseases, because that's actually quite easy. It takes a lot of money, but once you find something that works, you can replicate it pretty easily. And that was one of the learnings, I think, that we found out when we were kind of studying the market.

We found out a lot of times that charities might Start some research and then maybe they don't have enough money to finish the research. It actually becomes the scientist's job to then go find another charity to apply that research to, and they're just kind of hoping that these other charities have the money.

I say charities because it's really the parent advocacy charities who are paying for the research. It's not the pharmaceutical companies. 

Jessica Fein: That's such an important distinction and so backwards.

Megan Nolan:[00:20:00] It's very backwards, which is almost a whole other conversation, but really quickly. The reason is because it costs a lot of money to do research and pharmaceutical companies can't pay for that amount of money without expecting a profit that will cover the cost of the research.

So if they're treating a small patient population, they might not recover all of the money that they spent on research. So they just don't spend money on research, which is fair enough. Like they have businesses, they can't go into a hole. So as a result, you have nonprofits who are raising money, which is really a bunch of parents and their friends and family raising money to pay for that research until they find something that is working out.

And then usually the pharmaceutical companies will come on board. That's why I was thinking if we can do it, if we can raise enough money. Then we can pick up all of those smaller rare diseases that aren't in situations where they can create their own charities, where they can raise [00:21:00] funds. So those are kind of the ones we wanted to pick up and we wanted to replicate research under the same house so that things don't get lost, you know, if something's working, it should go right away to the next rare disease, shouldn't fall on deaf ears, you know, and so that's our long term goal.

That's what we're hoping to achieve. So fingers crossed. 

Jessica Fein: Fingers crossed, but I gotta tell you, you didn't stop there, right? So then just one year later, you launched something else, which is RareParenting, your online magazine. It's a good thing you're getting some sleep now, because this is just, it's so much.

What need were you trying to fill by launching the magazine? 

Megan Nolan: Yeah, so RareParenting was concepted because of that struggle that I went through pre diagnosis as well as the struggle that I continue to go through every time we hit a new symptom. There isn't enough information online with regards to symptoms of not only kids who are severely disabled like Domenico, but just kids in general with neurological disorders.

And [00:22:00] I'm talking from neurodivergency right up to severely neurologically disabled. There's just no home really that houses parenting advice. There's great other resources. Like most of us in this community have heard of Nord and we've heard of global genes as two examples. Those are two wonderful resources.

Both of them do have some content around symptom management. But there isn't a parenting website, you know, there isn't a parents. com or a babysitter. com that's just straight parenting advice. And so that's what rare parenting is. So I came in to create something that is symptom first or advice first. So you won't find my story or Domenico's story or your story.

On RareParenting, the stories of children and parents you can find in newspapers and on charity websites and so on and so forth, those stories are all over the place. So we're not looking really to tell stories, instead we're looking to [00:23:00] solve problems. It basically answers all of the problems that I've had, that I'm going through, and that other parents outside of me have gone through or are going through.

So articles range from, what are the early signs and symptoms of a neurological disease? God, I wish I saw that article. Three years ago, I would have immediately signed them up for genetic testing. It mentions the importance of genetic testing. And what are non inherited diseases? There's an article all about genetic testing as well, for example.

There's an article about what to do if you remain undiagnosed. If you go through genetic testing and you still don't have an answer. There's an article about oxygen loss at birth. That was something that we had known of and we had understood. So we had got an MRI to try to understand if that was the possible cause.

And then from there, For example, I remember someone asking me if I wanted my child to go to speech therapy. This was maybe two weeks after he was diagnosed. I was looking at this woman like she had ten heads. Why are you asking me if my nonverbal child should go to speech therapy? My [00:24:00] understanding of speech therapy at the time was extremely limited.

If I had read an article that said, why does my nonverbal child needs speech therapy, I would have learned in two seconds. I would have been the one picking up the phone and calling the speech therapist who knew that children can communicate with their eyes using this machine called an eye gaze device with their knees or feet by hitting these switches, which are like buttons that can actually record voices and talk back to them.

Right now, we're training to medico just on yes and no buttons, right? So do you want to watch a movie? Try to hit the green one for yes, or the red one for no, and so on. There's just a lot out there. There are a lot of people out there who have done wonderful things for our community. It's just that you don't know anything about it until you're actually in the community.

And all of this information, all of these experts, all of these devices, all of these therapies, should all be in one place. So that you can go onto this website, and you can learn, and you can understand, and you can [00:25:00] figure out, okay, here's how I should manage my son, and these are the things I need to watch out for, and these are the doctors I should probably add to my care team now to get ahead of things, because if he does progress into this area, I'll be prepared.

And so really, that's what RareParenting is, and that's why I created it. 

Jessica Fein: It is amazing, and I love how you compared it to saying there's no such thing like a baby center for this community, because the other thing is it's so accessible and beautiful and feels like such a good environment to be in as you're doing the research and trying to figure out and solve your problems, as you put it.

And another section that I love of your site is For the Ally, because people don't know what to do. They want to help. And they don't know how to help. 

Megan Nolan: Yeah, and this is also inspired by my personal experiences. You do have lots of family and friends who absolutely love you and want to help, but they really, it's true, they really don't know what to do.

They don't [00:26:00] necessarily feel comfortable offering babysitting services because it's scary. It's scary to them to manage. And frankly, we haven't put him with a babysitter, with any even qualified babysitter alone anyway, aside from maybe Or so, so I can't expect friends to feel comfortable, but yeah, the, for the ally section is to cover a variety of topics.

Like what are the right things to say? What are the wrong things to say? What are some shopping tips, you know, shopping lists over different things that you can buy different types of children, children who. Don't use their hands. No purposeful movement of their hands or children who are nonverbal or children who have high sensory needs, right?

Some kids, they need lots of stimulation and some kids actually are the opposite. They need really low stimulation. And so what we found with our friends and family is that we're getting a lot of clothes because they know he can't play with a lot of toys, which is very generous and very kind. But it [00:27:00] would be nice if we can direct them somewhere and say, you know what, here's a shopping list that I found on Rare Parenting, and these are the toys that actually work for my kid, so have your pick.

Jessica Fein: So if somebody's listening to this and saying, my best friend is struggling with her child, what advice would you give somebody who's saying, I want to help, I want to be an ally, I don't want to say the wrong thing. What would you say to that person? 

Megan Nolan: I think that it's important for everyone to realize that the parent is usually going through a lot, right?

And everything kind of starts with the parent and their management of the child. So I think it's important to always just as a friend or family member, be there for the parent, offer help. But try to offer something specific, and I think that that is why a lot of parents don't take up offers. Because if you have a friend who says, anything you need, let me know, I'll help you in any way you can.

What does that mean, really? [00:28:00] You know, what kind of responsibilities can I put on this person? And how much are they just being nice versus how much are they really willing to come to my house and help me, right? So I think that friends need to first define What kind of work they actually want to put in to help their friend.

And if the answer is they're willing to come to the house and help with the laundry or do the dishes or do some things that aren't necessarily managing the child but just take some stressors off the parent, then they should specifically say that to the parent. They should say, listen, let me come over on Saturday.

I'm yours for three hours. Give me a to do list and I will do anything you need. Something like that is way better than All of the clues in the world that you can gift my child. It's just so much more meaningful. And then there's the added bonus that you get to have your friend over, you know, which is always nice because we don't see our friends as much as we used to.

And that's the reality for any new parent. Every parent, their lives change, but ours change [00:29:00] exponentially. 

Jessica Fein: I love that suggestion, and I would say for anybody listening, the same holds true for your friends who are grieving. Exactly what you're hearing, say, I'm yours for three hours on Saturday. That is such a great piece of advice.

You're in the thick of it right now, with your own family, with your two children. And you are doing so much for the community and for other families. How do you balance that? How do you navigate between what you're doing on the home front and still a lack of sleep? I mean, it's not what it was, but it's still a lack of sleep and what you're offering the community?

Megan Nolan: I think what I learned in this job, in my new job at RareParenting, better than I've learned in any of the great jobs I had before, was the power of delegating. I wasn't a great delegator before, and this is really important, I think, for any parent of a child with special needs or disabilities. You have to learn to move off your plate, anything that, you know, someone else is capable [00:30:00] of doing.

So for me, with my husband, that was maybe a few years of arguing before he really became an equal player on the weekends or at night. Right. But outside of that, specifically in my job, the first thing that I did with rare parenting was to start to hire people right away. Because I knew that even if I felt capable and felt like, Hey, I can manage a lot.

It's just not possible, not with my home life being what it is. So right away I hired writers and editors and consultants even to help me build this magazine properly. We have obviously designers and people working on the back end and we have an admin. I have people, and I think in the past on any job that I had, I just kind of took it all on.

I remember I was in jobs where I was working 70 plus hours per week, which in Manhattan, it can actually be quite normal for people to be [00:31:00] workhorses in that way. But I knew that that was no longer an option for me. I just can't forget it. You know, I'm lucky if I get in a perfect 40 hours every week, because aside from my kids.

Domenico also has appointments every week. You know, he has speech therapy, he has physical therapy. Maybe we have to see the GI or right now he's getting fitted for more equipment. So there's always something really. And so one of the things that I do with my work week is I only allow calls on certain days of the week.

So I make sure every week to keep a couple of days call free. I don't allow any calls at all. And that's for the charity as well. So no calls with researchers, no calls with anyone related to the magazine. And those are just kind of my work days where I can make sure that my head is just in my computer and I'm just getting it done and punching out as much as I possibly can, knowing also that I may have to take breaks because maybe Domenico needs me.

I don't actually let anyone change Domenico [00:32:00] just because that situation worries me. And so I manage all of his changings. He has a G tube, so I'm very on top of all of his feedings. Most of his medicine is in the morning or basically before work hours or after work hours. So I don't have to worry about medicine during the day.

It's more just feedings and changing. And I want to be participatory as well, right? I previously was his caregiver 24 hours a day. Right now, I'm still his caregiver 24 hours a day, minus my work hours, right? So, I'm still sleeping with him. He sleeps with me in the same bed every night, aside from the weekends when my husband gets him.

So, I'm still there. I'm just allowing myself these windows every day to work, because I think it's important. I think this magazine is really important. The reason why I did it, the reason why I pushed forward with it, other than the obvious need for it, was because I knew I could. It was sort of like the charity.

I knew I could do it. So my background was in marketing and advertising and [00:33:00] magazines. The magazine I worked at was Vogue, and I also worked for an online publication called Who What Wear, which is a fashion magazine. And Who What Wear was a startup when I joined. And so I saw a lot of the back end, if you will, the back end of the workings of the office.

I sat with the editorial team. I understood the editorial process. And so it meant that I had the ability. To put this together, I understood what needed to get done in order to make it successful. I knew how to find the right people. I knew how to set up the processes. This is a skill like any other business.

I knew that if someone was going to launch a magazine, it needed to be someone who once worked in magazines. And if someone was going to launch one for parents of kids with special needs, it should be a parent with a kid with special needs because we understand. the content. We understand the voice we want to be spoken to in.

We understand the laundry list of articles. We have all the context too, because you need more than just my context for my magazine world, right? You need more than [00:34:00] just writers and editors. You also need doctors and parents because you want them included. Plus, writers, best journalists in the world, they don't make up content.

They do research, so our writers are interviewing doctors and parents, and then their voices are included in the article. And that's why the articles are so great, because they're written by professional journalists, and they include the doctors and parents perspective, so that parents can get something back that they know has been vetted by a parent and medically, and it can therefore be trustworthy advice that they can move forward with.

Jessica Fein: So then the question is, do you get any time for yourself? 

Megan Nolan: You know, it's funny. Yesterday I referred to RareParenting as my me time, which is just absolutely ridiculous. You’re me time should never be your job. It should never be your career. But when we're at the weekend, and my husband says, Hey, why don't you take an hour to go do something for yourself?

By the way, my husband has done a complete 180, and [00:35:00] he's the kindest man ever, and really, really has stepped up. But anyhow, so when he says, Go take an hour, what do you want to do? Why don't you go get your hair cut? Or something that I really never do. Or go get a pedicure. I think the last time I had a pedicure was six or eight months ago.

I don't even remember. I turn around and say, I'd rather work. I would rather work. I enjoy it. I really enjoy it because I'm doing something that helps the community. And it's also nice because I have the skill set. It's really, really rewarding for me to be able to use the skills that I've honed in my career and move them into our community. Give something back to our community. And that makes me happy. That really makes me happy. And that is really my me time. I know it sounds silly, but I don't really feel like I need other me time right now. Because if it wasn't that, I'd rather just Be with my kids, you know, I'd rather have more time with my kids and it is the thing that [00:36:00] de stresses me and for all those parents who don't have that, who don't have that passion project, I guess that's what you could say, this is my passion project, then those parents might look to other ways to unwind, right?

Whether it is going to go. Yeah. The spa or going out for an hour walk. Lots of parents exercise as their me time, right? That de stresses them and unwinds them. For me, working actually is a de-stressor, believe it or not. So everyone's different, but maybe that's why I get so much done. 

Jessica Fein: Yeah. And also how many people are so lucky that that's your you time because they get to benefit from everything you're doing.

Do you and your husband ever get any alone time?

Megan Nolan: We really don't get much alone time, and I think that's just because we don't have any help at night. So he's working during the day, of course, and, and we haven't looked into help over the weekend. We have help during the week, obviously, right? So I'm working from home.

We have our nanny slash caregiver. Who's taking care of the kids. And, you know, as I mentioned, I'm [00:37:00] involved, which I guess is important to point out there. If you have two kids and one is severely disabled, you really need two caregivers. One person can't take care of both kids. It's just very, very difficult.

And that is part of the reason why my days work out. The way that they do, because you have, I have to be there. You have to be involved. So if I was working in an office, this wouldn't be possible. We would have had to hire a second person. And frankly, I wouldn't have done it. I wouldn't have, if RareParenting needed to be in an office, I wouldn't have launched RareParenting.

I've launched it because I'm here with my kids and at night time, Domenico goes to bed at 7, which means I go to bed at 7. So there are no date nights, right? We haven't been out past 7 since before he was born, which I'm fine with. I've been fine with that for a really long time and I, I know one day that will change as he sleeps better, as he grows older.

We should be able to manage a babysitter knowing that I can come home and go to sleep late. Right now I have to go to sleep at seven because [00:38:00] if his first stretch is four or five hours, that means my first stretch is four or five hours. So if I go to bed at 10 and he wakes up at 12 30. How do I get through the next day?

I can't. I have to go to bed at seven. But life is just different now. We're okay being a family of four that is together at times. You know what I mean? We're okay with that. The disease is definitely working against us, but we're happy as a family the way that we are. And as for my husband and I, we know that in the future we'll have more us time.

What happens when the kids get older and then they leave the house and everyone's crying that they miss their kids? So it's sort of like I'm going to take every second that I have, especially with a child who's severely disabled because his lifespan is not necessarily what other kids lifespans are. 30 percent of kids with his disease die before age three.

He's three now, so he's missed that number. Luckily, but that doesn't mean that, you know, he's going to outlive all of the other kids. Many of the kids don't [00:39:00] make it much past three. Many of them don't make it to 30. So we don't really know. And that's another reason, talking about motivation for raising money for the charity.

When you're faced with the fact that your kid could die, you will do anything. And so for us, that means raising money to find a gene therapy, or like I said, a stem cell therapy or a drug that can change his outcome. Maybe it won't make him perfect. Maybe he won't, you know, be like all the other kids, so to speak, but if he can have a better survival rate. And if he can slur words, right now he doesn't say any words. If he can start to slur words, if he can wobble on his feet as opposed to not walking at all. Those are huge wins. Those are game changers. You know, if we can get rid of his seizures, all of these different things will just completely change our lives.

And we truly, truly believe that we will find something that will work for him. And I guess that's another reason why I'm not as worried [00:40:00] about super personal me time or lots of date nights with my husband because we believe that we will find something to change our son. And when that happens, our whole lives will change and we can take our me time a couple times then.

Right now it's like just heads down. Let's get it done. 

Jessica Fein: So much has happened in such a short time for you, I mean, it was not that long ago that you were holed up in your home not being able to even get in the shower, not seeing anybody. If you could go back and talk to yourself now, what would you tell that woman who is saying, I can't go on a walk, I can't even make it into the shower, what advice would you give yourself?

Megan Nolan: If that person existed today, I would give them RareParenting, honestly. That's really why I created it. I would give them the article, Early Signs and Symptoms of a Neurological Disease, and say, Hey, you're not crazy. If you're feeling like something is wrong, go get genetically tested. Or, if you have serious [00:41:00] concerns, because you're not sleeping at all, for example, if you have serious concerns, See a neurologist and here I can refer you to one and let the neurologist evaluate your child.

The neurologist usually nine times out of ten will recommend genetic testing if they understand all of the problems that you're having that may look like a neurological disorder. If for some reason, again, I would tell this person continuing on the conversation with this person. If for some reason you meet a neurologist who isn't mentioning genetic testing, or isn't pushing you in that direction, see another neurologist.

And it's just peace of mind. If the results come back and your child doesn't have a genetic disease, then Go through early intervention and figure those things out. At least you know now that you did some genetic testing. However, if your kid did a genetic test and the symptoms are severe, such as the symptoms with mine, it's also possible that you [00:42:00] didn't get the right genetic test.

So sometimes you have to take multiple genetic testing, right? I wouldn't tell every parent that is a little bit worried about their kid to go into genetic testing right away. However, if the symptoms are severe and you're going through months and months of struggle, push for genetic testing and push for the right genetic testing if you don't get the right answers.

Again, all of this information is on Rare Parenting and it's much more eloquently said and written by professionals than I'm describing it now, but it's all there. And I, I wish. Gosh, if those articles were there, you know, back then, we would have had an earlier diagnosis. Life would have been much easier for us.

That's why we're parenting is here. I want to help people. I want people to read an article and say, Oh, okay, I get it now. And so hopefully we can change people's lives. Honestly. Hopefully we can remove the burden from the shoulders of parents. Some of the burden, [00:43:00] hopefully we can get them symptom management faster, get them understanding the doctors they need to reach out to faster, get them developing their care team faster and long term, get them in touch with other parents.

Longer term, we'll have a forum on RareParenting as well. So parents will be able to connect with each other and they'll be able to talk to each other and meet each other. So that's coming up. 

Jessica Fein: Well, I wish that this existed many years ago when we were struggling at the beginning trying to get a diagnosis for Dalia.

And even then, once we were adjusting to every new stage, I know that rare parenting would have been so huge for me and for the family. So I'm just really so glad for all of the people in the community who now have this place to turn. You're doing tremendous work and thank you for sharing your story with us today.

Megan Nolan: Thanks for having me, Jess

Jessica Fein: Here are my takeaways from the conversation with Megan. Number one, listen to your intuition, you know your child best. Number two, sometimes the best motivation for doing something is [00:44:00] believing that you can, and that you need to. Number three, when we think creatively about how to use our skills, we can make an impact in ways we might never even have imagined.

Number four, me time looks different for all of us. For some, it's exercise. For others, it's work. And I love how Megan talks about her work as her passion. When you find the thing that marries the two, it's an amazing feeling. And number five, to show up meaningfully for your friend in need, offer something specific.

Maybe that's showing up on a Saturday and completing their to do list. And by the way, if the friend you're trying to support is someone affected by rare disease, check out the For the Ally section on Rareparenting.com. Thanks so much for listening. I hope you'll share this episode with a friend. And if you're enjoying the show, please take a minute to rate and review it.

That is the best way to help us grow. Have a great day. Talk to you next time. 

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