CW: This episode includes discussion of grief over the loss of a child.
It is dedicated to Adelaide's memory.
In May 2016, Kelly Cervantes and her family received two life-changing pieces of news: her husband, Miguel, had landed the starring role of Alexander Hamilton in Hamilton: An American Musical in Chicago; and their then-7-months-old baby girl, Adelaide, was diagnosed with epilepsy — and eventually, infantile spasms — a severe form of childhood epilepsy. She transitioned from being the family’s primary bread-winner to a stay-at-home mom and full-time caregiver. Eventually, she found her voice and purpose with the non-profit Citizens United for Research in Epilepsy (CURE), where she is currently a board member. The family hoped that science would catch up to their daughter…but that was not meant to be. Adelaide passed away due to complications of an as-yet-still-unidentified neuro-degenerative disorder…5 days shy of her 4th birthday, and just weeks before Kelly was to receive a WEGO Health Award for her contributions to patient advocacy blogging for Inchstones. In a demonstration of incredible resilience, Kelly made a public promise to her daughter: even though Adelaide’s battle was over, she would continue to fight for families affected by medically-complex disorders. By organizing fundraising campaigns, speaking at epilepsy events across the country, continuing her writing, and hosting CURE’s podcast Seizing Life, she makes sure Adelaide’s struggles were not in vain, and keeps hope alive for all the Adelaides to come. Her hope is that in publicly sharing her family’s journey with epilepsy and the real-life moments that come with parenting and grieving a special needs child, other parents in similar situations will learn they are not alone.
Tune in as Kelly shares:
- how Adelaide was initially diagnosed as an infant
- that Adelaide’s longest stretch seizure-free was three months long
- that in 30% of epilepsy patients, seizures are intractable despite intervention
- that 1 in 26 people will be diagnosed with epilepsy in their lifetime
- that while certain types of epilepsy can be rare, epilepsy itself is not
- that there is a lot of stigma attached to the diagnosis — especially for adults
- why NOT to call an ambulance when you see someone having a seizure
- that epilepsy is always a symptom of something else: from TBI (traumatic brain injury) to genetics
- the need for more funding in epilepsy research
- how she acted as an advocate for her daughter
- how she learned to speak medical jargon to be taken more seriously by Adelaide’s doctors
- the importance of mental health support in the grief journey
- that Adelaide also had MCAS (mast cell activation syndrome) alongside her epilepsy — and her epileptologists often saw these comorbidities occur together
- why research gives her hope
- the importance of documenting seizures with video
Lauren: All right, guys, thank you so much for joining us. I'm here today with Kelly Cervantes, who is a mom and epilepsy advocate. You may be familiar with Kelly's story, because she has shared it very openly on social media. And she was also a recipient of a WEGO Health Award this year, which is how we connected. Her daughter, Adelaide, passed away six months ago. And it was all related to epilepsy, and she's gonna talk to us about everything. So Kelly, thank you so much for joining us today.
Kelly: Thank you for having me and letting me share this community story.
Lauren: Absolutely. I think it's so important for people to be hearing Adelaide’s story, and we're making it count. So I'm just really glad you're here. I think we'll start at the very beginning. Why don't you tell us how you first realized that Adelaide was sick?
Kelly: You know, hindsight is 20/20, right? So I look back right after she had been born, and we were in the hospital and the nurses were commenting on how she was a little bit floppy. And in my mind, I'm like, well, all newborns are floppy. My baby is clearly perfect. How dare you say anything. But then we took her home and she started losing a lot of weight. She wasn't meeting milestones. By the time she was two months old, her pediatrician was, like, “You should probably go see a neurologist.” But at that point I was still, like, I'm not going to be the super crazy freaked-out mom. I'm sure it's nothing. We’ll push through this; all kids develop at their own pace. It took two months to get in to see the neurologist. So now, Adelaide is four months old. She's still not holding her head. She's not making any attempts to roll over. But cognitively, she's there; cognitively, she’s with us. Tracking, smiling, engaging. And at that point, the neurologist diagnosed her with hypotonia, which essentially is low muscle tone. Couldn't tell us why; we start doing a battery of tests. Over the next three months, there were MRIs and ultrasounds and blood tests — and everything came back unremarkable. When she was seven months old, my husband, Miguel, went to go pick her up at daycare. She had a doctor's appointment, and he is putting her in her car seat. And she has the seizure.
The entire left side of her face went slack; it almost looked like a stroke.
It just so happened that three days later, we already had an EEG scheduled, which is where they put the leads on all over a person's head and they track brainwave activity. So we went ahead and three days later did the EEG, and the results for the first time were abnormal. So we went into the hospital for a longer stay so that they could monitor her, and during that stay is when she was officially diagnosed with epilepsy. They actually did not see any seizures while she was in the hospital. Up to that point, the only seizure that we had really seen was that one in her car seat. But they could see something called epileptiform activity, which essentially is irregular brainwave activity, and that very often leads to a seizure. They started her on an anti-epilepsy med. In my mind, I'm like, great, we got her on a med, we're good, everything’s gonna be fine now. We've got the seizure, whatever thing, under control, and now we can go back to looking at the hypotonia, and why she's not physically developing. She actually had two of her best months. Really engaged. She started to make a lot of progress. We had her in physical therapy and occupational therapy at that point. And then at nine months, my husband called me. I was actually in Chicago at the time. Our family was transferring; we had been living in New Jersey and for my husband's job, we were moving to Chicago. And I was in Chicago looking for our family's home. Miguel calls me and says that she's doing this funny head drop, this weird … he thinks she's losing consciousness. He's a little concerned. We decide just to take her to the hospital, and I get a call later that day from Miguel and the on-call neurologist, informing us that her brainwave pattern was now showing something called hypsarrhythmia, which is only seen in infantile spasms. Which is a particularly devastating form of pediatric epilepsy. It's fairly rare. There are some frontline treatments that work in a lot of kids. They are terrifying. One of them can potentially cause blindness. The other one is a high-dose steroid. Adelaide bloomed … she just looked like a giant marshmallow and was very uncomfortable. If she was awake, she was crying. Those drugs got rid of the hypsarrhythmia, but we never got rid of the seizures. The infantile spasms would come back two more times in her life. And every single time the infantile spasms came back, it would wipe clean any development that she had made up to that point. So let's say she had been doing better with head control. Let's say she was bringing items to her mouth; let's say she was eating by mouth a little bit better, swallowing, making better eye contact, engaging with us. When the infantile spasms came back, smiles went away every single time. We would get the spasms under control, but the seizures would persist. She passed away five days before her fourth birthday. And I think from the age of seven months, until she passed, the longest stretch we had of seizure freedom was three months. So I think it's a misconception, in the public, that epilepsy is something that can be controlled. Be it by marijuana or CBD, which has been so widely publicized in the media, or one of the many drugs that's available out there, or by the ketogenic diet. But in 30% of patients, they remain with intractable seizures, meaning they are uncontrolled — after med after med after med. A third of the population with epilepsy is a fairly significant portion of people that you're talking about. One in 26 people will be diagnosed with epilepsy in their lifetime. So while there are different types of epilepsy that are rare … infantile spasms, Dravet … as we are starting to learn more about the genetic implications of epilepsy, the genetic causes, there are specific types that may be rare, but epilepsy as a whole is not. And there has been stigma related to it for centuries.
Lauren: Did you guys experience any of that stigma as Adelaide was getting diagnosed and treated, as well?
Kelly: No, I think a lot of the stigma comes more as an adult. If you can't drive, well, why can't you drive? Did you lose your license because you were drinking behind the wheel? Well, no, I have epilepsy. Or in the workplace, if someone has a seizure in the workplace, are they considered a liability?
Do we need to call an ambulance every time someone has a seizure? The answer is no, you do not. Please don’t!
So, I think seeing a seizure can be … certain types of seizures. I think that's another thing; there's so many different types of seizures.
Lauren: And this is something people really don't understand about epilepsy.
Kelly: No, they think of Grandma. They think of the tonic-clonic seizures that you see in the movies, on TV — someone's drug overdosing, and they're having a seizure, and that is what people think of. But you could be talking with someone, and they just sort of blank out for 2, 3, 5, 10 seconds. And then they come back to you. They’ve just had a seizure, and perhaps you just thought they lost their train of thought. That was actually them having a seizure. There are so many different types; Adelaide had at least three or four different types of seizures.
Lauren: Is that common, too, for patients to have more than one kind?
Kelly: Yes, absolutely. Which makes it that much more tricky to treat. So, one med that we would put Adelaide on would help control one type of seizure, but it would aggravate another. And none of these prescriptions come without their side-effects, which is very well known in the medically complex community. All of our meds, regardless of what the condition is … sometimes the side-effects are even worse than what they're treating. It's such a misunderstood diagnosis. Yes, it is a diagnosis, but epilepsy is always a symptom of something else. So whether it is a traumatic brain injury — you could have epilepsy after being in a car accident. Or we're seeing a lot of epilepsy in our veterans who are coming back from wars after their car has been blown up on the side of the road, and they have these traumatic brain injuries. It's called post-traumatic epilepsy, and we're seeing it a lot in our vets coming back. Then there are the genetic epilepsies. And because there is such a wide variety, you could have someone who is fully functioning, ludicrously successful, has a family — you'd never know. And then on the other end of the spectrum, you have someone like my daughter. So I think it can be very difficult for people to wrap their heads around a condition that looks so different in so many people.
Lauren: And it seems like the medical research hasn't quite caught up with the complexity, the breadth of conditions here, too.
Kelly: No, and that’s something that I've really been trying to focus our platform on. I firmly believe that the only thing standing between us and a cure or better treatments for epilepsy is more money. We need more money for research. It is shockingly underfunded — both by the government and in the private sphere. So, Citizens United for Research in Epilepsy (CURE) — full disclosure, I'm on their board — they are the largest, privately-funded research organization raising money for epilepsy research. In the last 20 years, they've raised $60 million. Which is phenomenal.
Lauren: Yeah. But that's over 20 years.
Kelly: That’s over 20 years. And $60 million. And how much research costs, and this is the largest organization and this is what they've been able to do? So it can be very frustrating. We still have so much more that we need to know. But then the ramifications go beyond that. We just don't have the researchers doing the research; we don't have the epileptologists in the clinic seeing the patients where the demand is.
Patients will wait two months, four months, six months before they can get in to see a doctor.
Lauren: And these months are critical, too.
Kelly: Absolutely, you have a child, or yourself and you're actively seizing. And you can't get in to see a doctor because there's just not enough of them. And I can only imagine … every time I meet an epilepsy doctor or researcher, I thank them, I hug them, I give them all the adulation and praise. Because it is a really tough field to go into. Thirty percent of your patients, you will not be able to help. That sucks. You will have patients die, and there will be nothing that you can do about it. And that's really hard. However, I do think that there is so much progress that can be made. And I really hope that there are young researchers out there, that there are young doctors out there, who are looking for specialties where they can really make an impactful difference in people's lives and in pushing research forward. Science couldn't catch up to my little girl. But I absolutely believe that we can push science forward so that it can catch up to the next Adelaide.
Lauren: Absolutely. So you've mentioned one of the organizations you're on the board of. Tell us about all of the various levels of advocacy work you're doing here – because there's a lot going on.
Kelly: Yes! I like to stay busy. I've given myself a little bit of a reprieve.
Lauren: I mean, fair enough.
Kelly: But yeah, grief sucks. So, I'm on the board of CURE and assist with fundraising and going through and helping to choose which research grants we’re going to fund. Also, through CURE, I host my own podcast called Seizing Life. We release a new episode every other week, where I am interviewing people who have epilepsy, scientists, researchers, clinicians on a wide variety of topics, to educate the community and to be a resource for all. I have my blog, which is how we met at the WEGO Health Awards.
Lauren: And your blog is called, for everyone listening?
Kelly: My blog is called Inchstones, and it can be found at KellyCervantes.com.
Lauren: And we'll link to that on the episode page, for sure.
Kelly: Perfect. I tend to write in a very raw, real, and hopefully sometimes humorous way about our journey.
Lauren: It really is a diary of what you've been through.
Kelly: I started it about a year-and-a-half ago. So it was really the last year, year and a couple of months, of Adelaide’s life. And then I sort of picked it up again, here and there, discussing the grieving portion of losing a child.
And, hopefully, the ambitions that I have to keep Adelaide’s legacy alive, because I promised her that I wouldn't stop fighting.
I think Adelaide gave me an incredible gift. I wish that she didn't have to go through what she did to give it to me. But the way that I see the world now, and how fulfilled I can be through advocacy, through sharing our story, through making people aware of what epilepsy actually looks like … how complicated this disease is, what it looks like just to get out of our house in the morning with her … all of these things. And I never would have been able to connect with these amazing people in this community and beyond. For that, I'm forever indebted to her. And I wish more than anything that I could not have that and I could have her, in whatever form. But you have to make the most of the cards that you're dealt, and so she gave me this gift, and I'm gonna run with it.
Lauren: And a lot of what you've covered in the blog, too, and through your social media, is the experience, not only of, as you say, the minutiae of getting out the door with her in the morning, but also that you have a son. So he was growing up with a special needs sibling, and what that looked like. And really how you guys were fighting for more awareness, and more funding into research, as you say, so that Adelaide, her legacy, will really matter.
Kelly: Absolutely. Epilepsy, like any chronic condition, it touches more than just the patient affected; it touches all of their loved ones. Adelaide could never speak, she couldn't have a voice — but I can be that voice for her. I think advocacy is so important. But I am also able to recognize that I am in a unique position, because Adelaide will never have a job, she will never have her own social media profile. She's never going to date, all of these things. Her epilepsy will never affect her in a social stigma way, in the way that it might affect someone else. So, I can get out there and I can talk about it. I don't have to deal with the stigma aside from someone maybe being annoyed that, once again, Kelly is out there on another Epilepsy Awareness Day … there she goes again! (laugh)
Lauren: I'm pretty sure you've earned your soapbox!
Kelly: Thank you. So to that extent, I am fully aware that I am luckier than most in this advocacy world where I don't have the personal stigma; I don't have to worry about that. So to me, that means that I have that much more responsibility to get out there and to share what these experiences are like, and to educate, and to bring awareness — and hopefully through that, more research.
Lauren: One of the things you touched on as well is the lack of education, the lack of specialists — that there aren't enough doctors out there to treat these varying epileptic conditions. Can you talk us through ways in which … I know, based on your experience, there were definitely ways in which it didn't work with the healthcare system. But were there ways in which it really did work and did function well in any part of the experience? Can you imagine or even suggest ways that we could immediately try to fix the problem?
Kelly: One of the tricky things about epilepsy is that it affects the brain. The brain controls the rest of the body. A lot of people with epilepsy don't just have seizures. They have other pieces that are affected, many other co-morbidities. So someone with seizures, often there are mental health issues coupled with that. In Adelaide’s situation, we had pulmonology, we had cardiology, we had allergy and immunology. She had six or seven specialists at any given time in her life. So it was important to me, and it took a while, to have the fight to find the right doctors who were willing to work together, and to not accept ‘no’. I needed to know that her allergist, who would be speaking with her epileptologist … because Adelaide’s seizures were very much related to inflammation.
So the two went hand in hand; she would have these horrible allergic reactions with major inflammation, and then the seizures would go out of control.
So I needed to know that they were communicating, because there were treatments that we could do together, jointly. Maybe one knew about something that the other didn't. So I met with many different doctors in many different specialties before I found a team that was willing to work together. There are doctors out there who are willing to fight for … for ourselves, for our children. You just have to get out there and find those doctors, but they're there. It just takes a little extra work and you have to have the fight. The other thing I would say … and I struggled with this early on, because it felt like such a huge burden … but for the caregiver, you know your loved one, or for the patient, you know yourself better than anyone else in that room. I used to walk in to the office, and if a doctor would challenge me on something, I'd be like, “That's fair. I understand that you have a degree in this and you have decades of working in the healthcare industry. However, I am with my daughter 365 days a year, 24 hours a day. So I know her best, and we will work together as a team on this. I am not inferior to you.” I think you have to have that confidence walking in there — because these doctors are amazing, but they don't know everything. It's very easy to just accept what they're saying. And fingers crossed more than more than not they do have the experience and they do know. But if something is not sitting right in your gut … I can't tell you how many mothers I've spoken to who thought that their child was doing a funny behavior, questioning if it was a seizure. And they took them into the pediatrician; the pediatrician was, like, “No, they're just colicky.” Or, “It's just reflux or something.” And they keep seeing it and it does not seem right — and then they take them into the emergency room, and it's seizures. So you have to have the fight; you know in your gut when something is not right. And then you have to find the doctors who will listen. It's a journey, and it's hard, but they're out there. It gave us at least two extra years with Adelaide because we found those doctors.
Lauren: You said that pretty early on, the doctors knew what was going on. Once you were starting to see specialists, you didn't really have to argue that Adelaide was going through these seizures and that she had this condition. But do you think that, in this situation when you were meeting various doctors and specialists, do you think that at any point they took you more seriously or less seriously at different points, based on her presentation?
And I learned, probably within the first year, that if I used their words, if I used the doctor lingo, they took me much more seriously.
So instead of calling it a spinal tap, I called it a lumbar puncture. I can't think of another example off the top of my head …
Lauren: But you were using their terminology.
Kelly: I listened to the words that they used, and then I would write them down, and then try and remember them. And if I could regurgitate those words back to them, then they respected me much more. So frequently, I would have the nurses or the doctors ask me if I was in the medical field. Absolutely not, I got my worst degree ever in human physiology, my junior year of high school. I am not a doctor, or medical professional — except by practice every day for the last four years.
Lauren: Well, that’s half a medical degree!
Kelly: I think so! But you learn their words, and you talk like them, then you earn their respect, and you can get a lot farther. You can get more answers from them; you can get more information from them. And then do your own research and educate yourself on the condition, educate yourself on the side-effects of the drugs so that when you go in there with these educated questions, you're going to get educated answers back. That just makes such a big difference if you are invested in the knowledge.
Lauren: Absolutely. One thing we touched on here, but haven't delved too much into, is this concept of grief, as well. That the grieving process, you having lost Adelaide, is as much a part of the chronic illness experience as anything else. Because this is always something that could potentially happen. This is something that, for people living with chronic illness, there's often the grieving of their former selves. I'm sure you went through a process when she was diagnosed, and as you were trying to take everything on and really fully understand what was going on with her. What has the process been like for you, as you've spent the last few months? I saw you two weeks after. That's when we first met. Definitely, none of this is easy. But can you provide any insights for our listeners on what that grieving process is like, and how to move through it with such grace as you guys have?
Kelly: Thank you. I had hoped when Adelaide was in hospice, and we knew that we were losing her, I remember hoping that because we had spent so much time grieving her while she was alive, that maybe that would be like payment — grief payment in the bank. Time served, if you will,
Lauren: Little did you know, I’m sure.
That the grieving process wouldn't be so hard afterwards. And that was not the case. In the slightest.
In these medically complex situations, the grief is just as complex. I am relieved that she's not in pain anymore, that she's not struggling. Absolutely. I never question … we probably could have kept her alive longer with various interventions. And we chose not to because she was struggling so much, and she was in so much pain, and it just didn't seem fair anymore.
Lauren: It wasn’t humane.
Kelly: No, to put her through that.
Lauren: That’s a huge decision as a parent.
Kelly: No parent should have to make that decision ever. I know we did the right thing for her. But that doesn't mean that I wouldn't do anything to have one more day with her. And that I don't miss her terribly and still talk to her every single day.
Lauren: You're sitting in her room right now.
Kelly: I’m sitting in her room right now looking at all of her things, in the room that we spent so much time in. It's so quiet. I used to call our house Grand Central Station, because there were nurses coming in and out and physical therapists and occupational therapists, and she would get infusions at home for various things. And then it was her oxygen machine, and her pulse ox alarms and her feeding pump. Her room had become essentially a hospital room. I remember sitting in her room the day after she died, and I could hear the baby crying across the hall and some pipe making some strange noise in our building, and a dog upstairs. All of these things I had never heard before, because it was so quiet. I don't think that there is any trick to moving through grief gracefully, because I think it hits all of us in different ways. I think the first step is just to give yourself grace. And give yourself time. This week … I had been doing so much better. I'd been much more functional; I've been starting to feel a little more like me, wanting to be productive. And then my husband and I went on vacation last week and came back, and I had a major grief regression this week.
I mean, coming back home, and yes, your daughter is still dead. And that sucks.
But I've sort of allowed myself to be, like, okay, we're gonna take it easy this week. I'm going to cancel a handful of plans and let myself just veg out and watch sitcoms on TV. And then I will make another effort next week.
Lauren: When you’re ready.
Kelly: Yeah. I'm very fortunate that, because of my husband's job, I am able to do that. I was Adelaide’s primary caregiver; she was my night and day, every minute of my life was spent taking care of her. So overnight, my world entirely changed. And that was really hard. You also lose all of the people that were in your life. I didn't just lose my daughter, we lost her nurses who had become our family. We lost the hospital staff, we lost the doctors. We lost her various therapists. There’s this whole team — I called them Adelaide’s Army — that essentially kept her alive and helped us get through this. I lost her and then you lose the daily connection with all these other people as well. And yeah, it just freakin’ sucks.
Lauren: We talk so much about individuals who are living with chronic illness, and they have advocates and caregivers. Have you guys, as caregivers, between you and Miguel and Jackson, have you also sought your own follow-up care to move through this process? And to do it mindfully?
Kelly: Yes. We actually had Jackson in therapy for the year before she passed.
Lauren: And he’s older.
Kelly: He's older. So he was seven, three-and-a-half or so years older than her. So we had him in therapy to try and help him process it. Our house was very stressful. Adelaide would have seizures, and everything in the house would stop. A lot of times, she would stop breathing during her seizures. Her alarms would go off, and if they went too long, I would have to administer an emergency med or try and get her breathing again. Jackson was around for all of that.
He saw it all. In fact, if I was making him breakfast and she started having a seizure, he would be, like, “Mommy, she's having a seizure.”
And then he would take her hand and start singing to her, because he thought that his singing to her stopped the seizures.
Lauren: That’s very sweet.
Kelly: It’s very sweet, but how bizarre for a 5-, 6-, 7-year-old. That's his normal, right?
Lauren: And these are going to be the memories that he holds on to as some of his earliest, as well.
Kelly: So we had him in therapy pretty early on. And then for a little bit after her death. I sought out help pretty soon after her death. It probably would have been smart for me to start seeing someone before, but I didn't feel like there was time and I didn't want to be away from her. But I sought out help afterwards. And Miguel and I just started marriage counseling, as well. And honestly, our marriage is in remarkable shape. We're doing very well, but we've been through serious trauma, and I think that it's just very important in the same way that you go to a physical doctor to get a checkup, that you need to go to see a therapist every once in a while to get a good mental health checkup as well. And there are few things more important in my life than my marriage. And so, I’d better do everything I can to make sure that that stays strong, too.
Lauren: Absolutely. And this is also your partner who you've been through all of this with, so only you two understand it on the level that you do, as well. Can you talk to us about the future of the advocacy work that you're doing and the future of fundraising for research initiatives into epilepsy?
Kelly: For me personally … I'm working on a book, based on the blog. I really want to bring insight of this medically complex life into the pediatric epilepsy experience. And also highlight the role of the caregiver.
Lauren: It’s an often misunderstood and under-appreciated role.
Kelly: And I think we're just now starting to see it be spoken about a little bit more in media and articles, and so hopefully, I can ride that train. It certainly doesn't hurt that my husband is Hamilton, here in Chicago,
Lauren: And that's also helped get you an audience, too.
Kelly: Well, it has been our platform. All of a sudden, he becomes this Broadway theater star, and people care what he has to say. So we were able to use that to really launch all of this off of, and to bring that much more awareness. So, we'll sprinkle a little Hamilton in the book just for for flavor. And not for nothing.
Our story is so unusual in that when Adelaide was diagnosed with epilepsy, one week later, Miguel booked Hamilton.
I was in Chicago trying to find us an apartment, and Adelaide was diagnosed with infantile spasms. And then, we found out that Hamilton was closing around the exact same time that it was determined that Adelaide’s condition — her overarching condition, which always went undiagnosed; we have never actually found out what was causing her seizures, or any of the rest of her symptoms. And we took her everywhere, did so many tests, and no doctor could figure it out. But we discovered, within the same time that they announced that Hamilton was closing, that her condition was neurodegenerative, and that we couldn't save her; that there were no other courses of treatment that could ever make her better. She was going to be in a permanent decline. And then she passed away. And two months later, Hamilton closed in Chicago.
Lauren: These experiences have gone hand-in-hand.
Kelly: They really have. Four days after she passed away, we found out that Miguel had been offered Hamilton in New York, on Broadway. You can't make this stuff up! So we'll put all of that in a book.
Lauren: And does that mean you guys are also going to be relocating in the midst of this whole process?
Kelly: Yeah. Miguel leaves for New York next week. And Jackson and I'll join him at the end of the summer. Jackson, we figure he's had enough with all the changes.
Lauren: Yeah. Let him finish school and stuff.
Kelly: Let him finish school, then we'll get to that. And then I will continue to do my research with CURE. But something that I really am passionate about, something specific research-wise that I really want to try and look into … in addition to epilepsy, Adelaide had something called mast cell activation syndrome (MCAS). The two really went hand-in-hand for her. And in speaking with both her allergy and immunologist and with her epileptologist, as they both became more aware of these conditions, they have seen a lot of overlap in their patients, a lot of epilepsy patients having mast cell.
I asked a friend of mine who has mast cell, “Do you know of other people who have epilepsy in the mast cell community?”
And she was, like, “Oh, well, you know, they have seizures as a side-effect of their mast cell.” And I was, like, “Ah, that's epilepsy.”
Lauren: Yeah, that’s epilepsy and that's major.
Kelly: So I really do think that they can both be inflammatory … mast cell’s entirely inflammatory, epilepsy has inflammatory triggers … both of them can often be treated with steroids. So I think that there is some sort of connection there. And if we could look into that more. So that's going to be a massive project, of getting all of these recent …
Lauren: But it is ‘inch stones’, isn't it? Little bits; you have to do piece by piece.
Kelly: And if Adelaide’s mast cell activation could have been diagnosed sooner, could we have gotten that under better control so that we could have gotten her seizures under better control? Could we have had her for longer? Regardless, her condition was neuro-degenerative, which was probably genetic, and she was not going to have a long life. We had no control over that. But could we have had her for longer if we had known earlier what to look for. If the epileptologists out there understood that mast cell activation is a co-morbidity. Or if the very few … I talked about there being so few epileptologists … there's even fewer doctors out there that really understand mast cell. But if they could understand the interconnections, I wonder how many lives we could save? Could SUDEP (Sudden Unexpected Death in Epilepsy), which has been in the news a little bit more recently … Cameron Boyce of Disney Channel, passed away from SUDEP. I don't know anything about his case in particular. But what if some of these unexpected deaths and epilepsy were actually related to mast cell issues? Twice, Adelaide had to be resuscitated because of mast cell issues. But I think if she had passed away, the cause of death would have been SUDEP. So there's a lot there that I really want to dive into that I'm excited about, that maybe could be a really incredible legacy for Adelaide. If we can push research forward, if we can help the next child, the next adult, the next family, just to have a few more answers. Give them peace, give them hope. Because at the end of the day, research gives me hope. Organizations like CURE give me hope; doctors like Adelaide’s give me hope.
And that's really the fuel that we have to utilize in this medically complex world. Because on many days, you don't have much else.
Lauren: Right. Absolutely. So we're rounding things out here. And I like to wrap up my interviews with Top Three lists. I was hoping … you’ve already touched on a number of really amazing pieces of advice for our listeners … but I'm wondering if you could crystallize it into Top Three Tips for patients, for caregivers, for anyone who thinks maybe there's something off, or is dealing with epilepsy or dealing with seizures that haven't been diagnosed yet. What would you recommend?
Kelly: My number one, if you think that your child or your loved one is having a seizure, and you're not sure, videotape it. We live in an amazing age where our cell phones are right there; you can video everything. Seizures never happen when we want them to, unfortunately! So when you see one, videotape it and then you can bring that in to the pediatrician, you can bring that in to the emergency room and say, “This is what I am seeing.” The second one that I mentioned earlier is, have the fight. Trust your gut. Be that medical patient advocate for your loved one, for yourself. And don't give up. These are life-and-death circumstances. Play the stakes as high as they are, and never leave anything on the table. Because you have every right to get all of the information, and all of the knowledge and all of the possibilities, and all of the treatments that are available. And then my third piece of advice is always just, as much as anyone can, talk about it. Talk about epilepsy. We would be in an elevator and Adelaide’s eyes would be closed, but I knew she was awake. And someone would be, like, “Oh, she's so sleepy.” I cannot tell you how many times “Oh, she's so sleepy.” And I would be, like, “Well, no, actually, she had a seizure this morning, so she's now overstimulated by this environment, and she can't handle it. So she's closed off because she has epilepsy.” I always try to use the word as much as possible, because I think the more that people hear it, the more they understand that it's not rare. And that it's a problem. And that it can affect anyone. It doesn't matter your skin color, it doesn't matter your gender, it doesn't matter where you're from, or who you love.
It is completely and totally non-discriminatory, and 65 million people in this world are affected, and one in 26 will be.
Those numbers are unacceptable, and we have not done a thing to change them in decades. Those numbers are not getting better. And in today's day and age, you really have to hope that they are, so just raise awareness in your personal circles, on your social media, at school pickup or at your holiday office party — whatever it is — in any way that you feel comfortable. Just use the word.
Lauren: That’s really beautifully said. Can you remind listeners, again, where they can find you and your work as well?
Kelly: Absolutely. My website is KellyCervantes.com. And then I am on Twitter, Instagram and Facebook at @Kellygc411.
Lauren: Excellent. And we're gonna link to all of this on the episode page. Is there anything else you'd like to share as we close everything out?
Kelly: I want to say to the chronic illness, the medically complex, and specifically the epilepsy community … when Adelaide passed away, we received so much love and compassion and strength and prayers, and we felt every single one. And we are just so incredibly grateful. This is not the kind of community that you choose to be a part of, but my gosh, is it an incredible one to be a member of. So we are just beyond grateful to everyone.
Lauren: Kelly, thank you so much. It's been so great chatting with you. And I really hope that continuing to raise your voice is gonna keep changing the way that we see these conditions, and the way in which they're funded and treated. And we have hope, as you say. There’s hope.
Kelly: Always hope. Thank you!