Episode #151 - 10 Years of Ella’s Race: Raising Awareness & Finding Hope in Fundraising for Epilepsy Research featuring Shalee Cunneen
10 Years of Ella’s Race: Raising Awareness & Finding Hope in Fundraising for Epilepsy Research
Episode Overview
This month on Seizing Life® we welcome longtime CURE Epilepsy Champion and current board member Shalee Cunneen back to the podcast to share her family’s journey with epilepsy and fundraising efforts for a new CURE Epilepsy research initiative.
Shalee Cunneen’s daughter Ella experienced her first seizure at one year old. That seizure began a journey for the Cunneen family that continues to this day. As they searched for a treatment to control Ella’s epilepsy, she endured thousands of seizures and missed important developmental milestones. Like so many families living with epilepsy, Shalee and her husband Blake felt powerless in the face of Ella’s uncontrolled seizures and sought a way to make a difference. As Shalee says in the podcast, they “knew they needed research” and found a way to empower themselves through fundraising for epilepsy research. Shalee shares her family’s journey, discusses their initial involvement in fundraising events, and how and why those efforts transformed into Ella’s Race, one of the cornerstone events of the CURE Epilepsy Champions program. As the race celebrates its 10th year this August, Shalee shares how the event has evolved, and why its focus is turning toward funding a new CURE Epilepsy research initiative for epileptic spasms. Shalee explains what epileptic spasms are, what is and isn’t known about the diagnosis, and the current state of the initiative. Finally, she discusses the impact that epilepsy has on siblings, and how Ella’s younger brother, Sean, has navigated the challenges of having a sister living with epilepsy.
ELLA’S RACE 10TH ANNIVERSARY
Sunday, August 24th, 2025
10am – 12pm
Learn More about Ella’s Race
Episode Transcript
Kelly Cervantes:
Hi, I’m Kelly Cervantes and this is Seizing Life, a monthly podcast produced by CURE Epilepsy. Today, I’m happy to welcome Shalee Cunneen to the podcast. Shalee has a daughter with epilepsy and has been a longtime supporter of CURE Epilepsy through Ella’s Race, an event named for her daughter that is celebrating its 10th anniversary this year. Shalee is also a current CURE Epilepsy board member, and full disclosure, a very close personal friend of mine. She’s here today to share Ella’s epilepsy journey, talk about her family’s fundraising efforts, and discuss a new epilepsy initiative that Ella’s Race is supporting. Shalee, thank you so much for joining me today. I’m so excited to get the opportunity to chat with you, my dear friend, one of my first epilepsy friends, about your amazing, incredible family, but specifically your wonderful, beautiful, fabulous daughter, Ella. Talk to us about Ella, who she is, and then we can get to the epilepsy piece of it later, but I want everyone to meet Ella for the fabulous person that she is first.
Shalee Cunneen:
Yes, Ella is a sweetheart. She is 15 years old, and she is just the light of every room. We are so blessed that she is such a happy child, despite everything that she’s went to, which as Kelly said I’ll get into later, but she loves water slides. She loves roller coasters. She’s a daredevil. She loves music, she loves to dance, she loves being silly, and she loves food. She loves to go out to dinner.
She’s one of those people that you get into an elevator with her and everyone’s staring at the ground or staring at the wall and she’s like, “Hi, hi.” She just makes you smile. We’re lucky that she has just that joy about her. She completely lives in the moment. She does not overthink things. She’s one of those kids that she goes to bed, and she’s asleep within five minutes, because she’s not overthinking her day and overstressing. She’s just living in the moment, and thinking about all of her favorite things, which includes, oh, my god, she loves Minnie Mouse, and Cookie Monster, and all of her characters. She’s just a really fun, sweet girl.
Kelly Cervantes:
Yeah, I love her to pieces. Now, to the more nitty-gritty pieces, but still certainly a huge major impact in factor in Ella’s life, her epilepsy. Talk to us about when she had her first seizure and how epilepsy has impacted her.
Shalee Cunneen:
It was just a couple days after her first birthday. We were sitting in our condo in Chicago, and Ella was eating lunch. I was feeding her in the high chair and all of a sudden, her right arm kind of moved up and down, and then she completely slumped over. I kind of worried that she was choking, because she was eating. My husband ran over, and we picked her up out of the high chair, and she actually wasn’t choking. She was having a seizure.
We called 911. She was still kind of just dead weight in our arms, completely slumped over, and they said, “Oh, this sounds like a seizure.” They sent an ambulance, but in the meantime, we’re holding her, and her body wasn’t really shaking to what, I didn’t know much about epilepsy, but I didn’t really understand that seizures could be… She moved a tiny bit, but then she was just kind of limp, and her eyes had rolled back a little bit. They got there, and I would say the whole thing lasted probably three to four minutes.
They took us to our local hospital. Luckily, the Children’s Hospital was right down the street, and we saw a neurologist while we were there. He said, “You know what? This could be a febrile seizure. She had a slight fever,” and by that, I don’t even call it fever, it was like 100.0. She’d had vaccinations a couple days before, but she was fighting a cold. It wasn’t, in my opinion, a big illness. Since they said it’s probably just a febrile seizure caused by her fever, which I didn’t think was really a fever, they said, “We want you to come back and have an EEG.”
We went back two days later. Luckily they got us right in, and she had the EEG. We had to sleep deprive her. If you’ve ever tried to sleep deprive a one-year-old, you understand how un-fun that is. We couldn’t let her go to sleep, but it was okay. We let her sleep about half the time. We got in there, and after the EEG, they came to talk to us, and they said, “We see abnormal brain activity. Your daughter has epilepsy.” I’m like, “What?” I think our world kind of changed right in that moment. We got all of the good statistics, like, “Hopefully your daughter grows out of this. 70% of people will, and hopefully this first medication works.”
We didn’t walk away with a really big plan at that point. We kind of walked away with a medication and we would follow up, but kind of not much information. When we walked back in the door, she started seizing again. We just turned around and went right back to the hospital. Unfortunately, when we got there, she started, the seizures just kept happening. Finally, they sedated her. They admitted us. They had planned to do an MRI, but that was three to four weeks out.
They scheduled one for the next day. At that point, we were just kind of bombarded by specialists. We had people coming in, telling us about rescue medications, telling us about occupational therapy, and physical therapy, and speech therapy. I’m like, “What is going on?” That was the start of this long journey.
Kelly Cervantes:
It’s always shocking to me how quickly epilepsy can come into someone’s life and just completely turn it on its head, and it really is this before and after moment. Before Ella’s first seizure, was she developing typically, or were there little concerns here or there?
Shalee Cunneen:
She was a little bit… The pediatrician, because we had been there two days before, wasn’t really concerned. She didn’t have as much muscle tone, but she was making eye contact, she was crawling. She crawled at 11 months. She sat on her own probably about eight months. Everything was a little bit delayed. She wasn’t babbling much at all. Again, they’re like, “She’s only a year. We want all these words by 18 months.” There wasn’t a significant concern.
I, as a parent, taking her to mommy and me classes was a little bit like, “Why are these other kids doing this, but mine isn’t?” I’m like, first time parents, you don’t know. I think obviously, when she had this first seizure, questions were answered, and they said the developmental delay could be a significant part of our journey.
Kelly Cervantes:
Yeah. You take her back to the hospital. They are talking to you about physical therapy, occupational therapy, all of these different things, trying the medication. At that point, did you get seizure control shortly after that?
Shalee Cunneen:
We did not. Then we tried a new medication, and we kind of thought that we were in the clear, we thought this medication was working until about, it was about six months after her first seizure. I would say she had seizures for about three months, and then we thought we had it controlled for about three months, and then she had another one, and we just went straight back to the emergency room. That’s kind of when we started new medications. They admitted her. We did an EEG for a couple days.
They found that she was having 17 seizures a day, two to three of those, we would see. We started a medication that we thought was going to be the one. It helped. We weren’t full seizure controlled, but things had gotten a lot better. It wasn’t until she was about two years old that we went in for an EEG. We thought things were okay, we didn’t have seizure control, but we thought things were okay. Overnight, they found that she was having spasms, and she was over the age of two now, so they weren’t titling it infantile spasms. They were calling it periodic spasms or epileptic spasms.
Our doctor said, “Look, these are horrible. These are really detrimental to development. These are hard to control. We need to get her on this medication.” Medication they chose was one that had significant side effects. I remember I was nine months pregnant, it was two days with my son, Ella is our first. I was like, “What? Here we go.” We started this medication, and pretty much from there on, she is still having spasms. We have been through so many medications, so many, I think about 22 medications, the ketogenic diet, the FDA trial of the CBD oil, steroid infusions.
We’ve had about five or six second opinions, the big names, Mayo, Cleveland Clinic, Boston Children’s, all of that, Toronto SickKids, and everyone kind of is coming to the same conclusion. They really don’t know what’s going on.
Kelly Cervantes:
We’ve talked about infantile spasms a handful of times on the podcast. Is the main difference between infantile spasms and the spasms that Ella is having simply that she’s over the age of two and that she’s not an infant? Do they present the same?
Shalee Cunneen:
I believe they pretty much present the same. She also has other seizure types, but they present the same. Her clusters of spasms can go up to 20 minutes, 20, 25 minutes. It’s scary. It’s long. They mainly happen at night. However, unfortunately, in the last 18 months things have kind of switched, and sometimes she can have them during the day, which is really scary. Having them at night is scary, because she needs to be watched around the clock. I don’t think we really knew. It took a while for us to learn about SUDEP and that, let’s face it, she could die during one of these seizures.
That, I was like, “What?” We always thought she was safe during sleep. Once we found that out, we started sleeping, I would sleep with a baby monitor in my face with the light on, with it on full blown volume when she was in her crib, and just wake up when she would have one of these. I didn’t sleep a lot. I was exhausted. We were lucky enough to have a night nanny for a while, but then I just said, “This baby monitor’s not working. I don’t trust it. I’m going to sleep with her.” I slept with her, and still sleep in the same room with her 14 years later.
We have twin beds in her room, and they’re six inches apart, and she’s bigger than me now, but I wake up and I know what’s going on. It’s just nice to be able to reach over and know she’s laying there, and that she’s okay, and that she’s breathing. It’s scary. You never get to turn off. I’m always worried about the next seizure.
Kelly Cervantes:
Yeah, absolutely. Now, you mentioned all of these different medications, all of these different fifth, sixth opinions that you had sought out. Has genetic testing told you anything? What about surgical workups?
Shalee Cunneen:
Yeah, so we’ve done all of the genetic testing, genome, exome, all the sequencing. Nothing’s been found. I’m sure there is something they think that her brain probably didn’t develop correctly in utero, but no one knows why. As far as the surgical workups, we were always that family that you never want your child to have brain surgery, but we were always hoping for the brain surgery. After all of these medications failed, they said, “Oh, hopefully she’s going to be a surgical candidate.” That’s why we did all of these other workups.
There’s no discrete or distinct lesion that they’re finding that they could go in and remove. Sometimes stuff comes from one side, and the other times, it comes from the other side. There’s nothing that’s found. I think there could potentially be some sort of surgery if things got really bad where they would have to remove some of her brain, but we’re not at that point, and hopefully we never will be. We’re just kind of hoping. We had a good five-year stretch where we were always going here or there, and I think we could just got a little bit burned out and were getting the same answers.
Right now, we’re just hoping, there’s obviously, why we’re here, there’s technological advances that come up all the time, and so we’re just hoping that something someday is going to be there for Ella so that she doesn’t have all of these seizures all the time. Unfortunately, everyone’s kind of stumped right now.
Brandon:
Hi, this is Brandon from CURE Epilepsy. Did you know that 30% of those diagnosed with epilepsy do not respond to current medications? That is why for 25 years CURE Epilepsy has been committed to inspiring hope and delivering impact by funding patient-focused research to find a cure for epilepsy. Learn more about our mission and our research by visiting CUREEpilepsy.org. Now, back to Seizing Life.
Kelly Cervantes:
How is Ella doing today? She’s still having these seizures, she’s having them at night. You talked about multiple seizures. Have you seen them change as she’s gotten older? She’s 15 now. There’s hormones, we’re going through all of this stuff, but developmentally, she’s still a child. I think this is something that so many parents deal with, these changes as hormones, as puberty enters into this subject. How have you seen the seizures change during that journey?
Shalee Cunneen:
Luckily, we didn’t see it with her seizures. We definitely saw it with her mood. Even though I kind of joke around that she’s my forever toddler, hopefully she won’t be my forever toddler, but she’s 15 and functioning at about a four-year-old level. We still watch Paw Patrol. I know all the episodes, but we saw mood swings. We didn’t see, thank goodness, seizure change, so that was kind of good. We do hear a lot about people when their kids go through puberty that their seizures just get so much worse.
We were actually lucky that that didn’t happen. We did see, actually, surprisingly, it went the other way. We saw that her seizures were a little bit further apart. She typically has these seizures once a week, and again, they used to be about 20 to 25 minutes, and now, we’re down to, I would say once every seven to 14 days. It can go more or less. We recently had a three-week streak, which I was like, “What the heck is going on?”
There is also a new medication that came out a couple of years ago, so kind of about the same time when she was going into puberty that we started. I think adding that onto her anti-seizure cocktail of medications that she takes, I think that that also helps during the puberty time. Now, she’s down to, her seizures are about eight to 10 minutes.
Kelly Cervantes:
Which is, we’ll take it. It is not good enough, but-
Shalee Cunneen:
I know, but…
Kelly Cervantes:
… all of those small improvements, they matter. When Ella was first diagnosed, obviously, you are incredibly well-informed at this point. You are a fierce mama bear advocate for Ella, but you didn’t know anything about epilepsy at the beginning, like so many of us. Where did you turn to for information? How did you find out about SUDEP?
Shalee Cunneen:
Right away, obviously, you want to look on the internet, you want to do things. My husband was like, he knows me. He was like, “No, we’re not doing this. Don’t go crazy. We’re getting your information from doctors.” I will say at first, I did kind of just listen to the doctors, like, “Oh, hopefully she’ll grow out of it. Most kids do.” I’m riding the positive. I’m an optimistic person. I am like, “Glass is half full. This is not going to be her life forever.”
My husband, I left my career, and my husband, I’m staying home with her now at this point. My husband’s like, “We have to do something.” For him, I was kind of the one in the weeds. Every day, we’re trudging to therapies and everything. My husband was like, “I want to get some information and I want to do something from sitting behind my desk.” He went to Charity Navigator and he looked up and he saw that CURE Epilepsy was one in Chicago, and two had four stars.
He looked them up, and initially, we got a lot of information from there. I felt like it was a very reputable source. We also got some information from the Epilepsy Foundation locally. We just kind of tried to not go down the rabbit hole of seeing things on the internet, but I knew nothing about epilepsy. I thought epilepsy was people having seizures that were similar to what people think of as a grand mal or tonic-clonic seizure, where they’re shaking and they drop to the ground.
I didn’t know that epilepsy could cause all of these developmental delays and everything. I was kind of floored. I was a little bit in shock, a little bit in denial, and tried to arm myself as best I could with legitimate information that was relevant, and not stuff that was just going to scare me. Pretty much [inaudible 00:17:02].
Kelly Cervantes:
That’s so smart. I think that’s what I try and recommend to new parents no matter what kind of diagnosis they’re facing, is to go and find the reputable nonprofits and go to their websites, especially the ones that are science and research-based. That’s where you’re going to get some of the best data-driven information, as opposed to a Facebook group can be really great for support and community, but perhaps not the best source for potential treatments.
Shalee Cunneen:
Totally.
Kelly Cervantes:
Blake finds CURE Epilepsy through Charity Navigator. What was it, aside from it has this high rating, it’s in Chicago, what is it that appealed to you about CURE Epilepsy?
Shalee Cunneen:
Well, we wanted answers. We needed research. We needed a cure, the no seizures, no side effects. We wanted her to be able to develop and not have these debilitating seizures all the time. We wanted the research and I think that that was huge for us, because I was taking care of her. I was home. It was like, “What can we do here?”
With her not being able to express how she feels on these medications, we hear so many stories of all of the side effects. That was just a big thing for us. We wanted to do fund whatever we could to eliminate the seizures, the side effects, hopefully get her on a better trajectory.
Kelly Cervantes:
You didn’t just stop there at finding this organization and utilizing the resources. You and Blake came together and decided to give back to CURE Epilepsy, to raise money for epilepsy research, and you created Ella’s Race, which is now in its 10th year. I have been delighted to attend several of these races when we lived in Chicago. You do a fabulous job. Tell us about Ella’s Race.
Shalee Cunneen:
At first, when Ella was initially diagnosed, the Epilepsy Foundation would put on a 5K run along the lake. We were supporting CURE financially, but then we wanted to do something with our friends and family to get them involved and let them, have them learn more about epilepsy. For three years while we lived in the city still, we just did this walk along the lake or run along the lake. When we moved out to the suburbs 10 years ago, my husband said, “You know what? We can do this.”
He’s like, “I’m going to support CURE Epilepsy. We can do this ourselves.” We contacted CURE and we looked into how can we do this? I think at that point it was a little bit of a newer thing for CURE. I think we were the first ones to ever do this, and we set out, to keep it very simple. We got a space in the Forest Preserve, and had a website set up, and had tee-shirts for everyone and had snack sponsors the first year. We had even Chick-fil-A don’t need chicken sandwiches for everyone, like a hundred of them. It was crazy, but it was just a really fun event.
We did that, and our first year was 2016, and we raised about $20,000 that year. Every year, the event has grown. The amount of people coming, the dollars that we’ve raised, we outgrew the Forest Preserve within three years. In 2019, which is one of our biggest attendance years, we had over 550 people. We ordered 550 shirts and we ran out. I was like, “Oh, my gosh, this is amazing.” What we did is we closed down the block where we live, and we have police escort. We do a 2.6 mile run, and that is to raise awareness for the one in 26 Americans who will develop epilepsy within their life.
We also do a one-mile walk, and it’s a fun,-friendly event. We’ve done a silent auction. Miguel did some nice live auction for us one year. It was so fun. I think that was the 2019 year. Then we pivoted. COVID kind of shut that down, and we did like a socially distanced walk, and we had signs that were made and stuff. Each year, it’s grown. Last year, we raised about $85,000. It’s pretty amazing. This year being the 10th year, we’re so excited, and we’re changing things up a little bit. Our goal is $250,000, and it’s a huge stretch, but I think we can do it.
I mean every year that we get new people that are interested in coming, and we find new people that have been impacted by epilepsy. One of my favorite things that my husband gives a little speech every year, and then he invites people that are out in the crowd to come up that have been touched by epilepsy. I feel like so many people don’t know how many people have been touched. They either have a friend, a family member, a loved one, or themselves who have epilepsy. Just to see the people that come up on stage that have been touched, there’s so many more people out there.
I think this event helps us to talk about epilepsy more, because people just don’t do it. There’s such a stigma and it’s so frustrating. I think that’s another one of the things that we want to do is not only raise the dollars, but we want to raise awareness. It’s so cool, our town has a little carnival usually the same weekend that we do it. We’ll go to that carnival later in the day with the kids, and I’ll see so many people wearing our lovely shirts. It’s just such a fun community event.
Actually, this year, we’re changing it up. We’re going red for the 10 year, so we’ll have new shirts and new logo for the 10 year. Can’t wait for that. Yeah, every year, we’ve just grown in the amount of dollars that we’ve raised, and it’s just been phenomenal to see all of the love and outpouring that so many people who get excited for it and just want to be a part of it.
Kelly Cervantes:
Yes, it is a fabulous event. For anyone who is anywhere in the Chicago area, Chicago suburbs with it, I highly recommend it. It’s just such a great community building, it’s an incredible day. Our family absolutely loved it when we were able to attend. I think one of the most amazing pieces about how you’ve been able to grow this event over the 10 years, and in doing so, you’re raising more and more money.
Now, with this $250,000 goal, you are able to really target research at this point that is going to hopefully impact Ella’s life, and in turn, your entire family’s. Talk to us about the epilepsy spasms initiative that you are working on with CURE Epilepsy.
Shalee Cunneen:
One of the things that we’ve noticed throughout all of these years in multiple doctors is people don’t know a lot about epileptic spasms. I always struggle saying that word. It’s a tricky one.
Kelly Cervantes:
Yeah.
Shalee Cunneen:
Everyone knows infantile spasms, there’s been a lot of research, there’s been a lot of great breakthroughs that have been made with respect to infantile spasms. I think the epileptic spasms that are a later onset, there’s not even a set definition of what they are. A few years ago, we came to CURE Epilepsy and said, “Look, we want to fund an initiative that’s really targeting epileptic spasms.” An amazing group was formed with doctors and researchers from all over the globe.
We initially committed to raising $500,000 for this grant, and now, we’ve decided to double it. We want to raise a million dollars. If we get this 250 this year, we’re going to be at that mark of raising a million dollars for epileptic spasms research. I feel like it’s just, hopefully it’s something that can help so many other people out there, because I do feel like it is such a rare condition, and they just need more research as to what’s causing it, how to stop it, what we can do.
Kelly Cervantes:
Yeah, I think it’s something that so many people don’t comprehend that when you have these ultra-rare kinds of seizures or something that there isn’t even a definition, that typically you walk into the doctor with a condition, and there is a protocol of how you treat something. When you walk in with epileptic spasms, or you walk in with, CURE has done this with Jeavons syndrome as well, you would walk in, and there was no set plan, not even just how you would treat it, but how you even define it, how you diagnose it.
These essential building blocks, focusing this attention on it, and then hopefully that becomes a white paper somewhere that another researcher picks up and is like, “Hey, you know what? I’m interested in this, and I’m going to out and get funding to take this forward and figure out more.” I think it’s such an exciting thing that your family has been able to spearhead that is already making a difference. To think that it all started from a walk in your neighborhood that your family put on, and it’s so inspiring. I think for a lot of people, it’s also incredibly overwhelming to think about.
You are taking care of Ella’s day-to-day medical needs. Yes, she’s in school, but it’s all very complicated. How did you find the time? How did you find that energy to put an event like this together?
Shalee Cunneen:
Well, when your kid has a disease like this, you feel helpless, right? You can’t help them. It’s not like you can go put a bandaid on it. I think for us it was like, “What can we do? What can we do?” You can’t just sit around and worry about it. That does no one any good. Yes, don’t get me wrong, there’s been plenty of tears, and everything else, and grieving, but at the same time, it’s like, “I want to feel like I’m doing something.” When we decided to do this, we started small.
I think the best thing to do is to start small. Each year, we’ve grown the event, and we’ve kind of seen what works and what doesn’t. There’ve been years where we did a silent auction. Then I said, “You know what? That takes way too much time. I can’t do that. That was overwhelming me. This shouldn’t be stressing me out.” Once you kind of figure out that sweet spot, then I feel like everything kind of comes together. I do feel like the first year is going to be the hardest, but if someone wanted to plan an event, you start small, and you grow from there.
You find something that you like to do. Our family likes to go on walks and be active, and our friends and family to do runs. I feel like you see them kind of all over. They’re a great easy way to raise money and awareness. We kind of went that route. I know people who’ve done other things as well, but it’s just kind of what you feel comfortable with. I love talking to people who want to plan an event. I think it’s so fun now to help people, because I have been doing it for 10 years. I can say what’s worked, what hasn’t.
One of the great things is if you ever do an event as a CURE champion, CURE has a wonderful platform that they use. All of the money aspect is taken away. You don’t have to create a website. They have a platform. They take all the funds, and they send the or tax-exempt letters and stuff, so that part’s out of your hands. That’s really simple. Yeah, I think anyone can do it. I think, again, you just have to start small. You have to find something that you like, and you think your friends and family would want to attend, and just give it a whirl. I think you’d be surprised.
Kelly Cervantes:
You make such a good point too. CURE Epilepsy does a great job of being a partner in these events. You’re still doing all of the legwork, don’t get me wrong, but that you are not alone in this, that you have someone who’s backing you up, and you have a group of champions like yourself who is willing to talk to people, and give advice, and connect via email, or text, or phone, or Zoom, or whatever to sort of help be that sounding board and get over some of those early humps as you’re first starting that event.
I would be remiss if I didn’t also talk about the impact that epilepsy can have on siblings. This is something that you and I have spoken about at length together, because our sons are right around the same age, and they really bonded together over having sisters with epilepsy. They were calling themselves the Epilepsy Brothers or something at some point. I think that that community of knowing that they had each other through pieces of this, even though their journeys are different, older sister versus younger sister, and Adelaide is gone now, but talk…
I think it’s important for parents to hear, because that sibling impact is so significant, how your family has been able to navigate that to sort of ease some of that stress, or which in some cases, it can’t be. How do you find that balance?
Shalee Cunneen:
Well, as you know, it’s hard. I get teary-eyed thinking about our boys and their conversations and stuff. I think it was great, them having each other was such a wonderful thing for Sean. Sean’s now 13, he’s a little under two years younger than Ella. The great thing is they’re buddies, and he knows her better than anyone, and looks out for her all the time. We call him the little big brother, but there’s so many things that he wants to do that our family can’t do, even just to go on a family bike ride.
She can’t ride a bike, she’s now too big for a trailer or a stroller. It’s just little day-to-day things that sometimes are really hard. For the most part, we try to focus on special things that we can do with him and special things that he can do with his sister. For example, she did Make-A-Wish a few years ago, and we tell him like, “Oh, this is all because of your sister.” We kind of try to paint things a little bit on what she does give him, and she loves him so much. It’s great.
We’re lucky, but going into this, we early on heard stories of how it is really hard on the siblings, and how they do feel neglected, and all the attention is on the child with a disability. We told ourselves right then and there that we weren’t going to do that. Now, we only have two children, so we can divide and conquer a lot. There have been times where she’s in the hospital for a week, and he’s kind of staying with grandma and grandpa, and we’re lucky to have a support system where they’re wonderful and do all these cool things with them.
It’s definitely a challenge. I think early on, you always just have to remember that that kiddo is there and that this is hard on them as well. I think the first time he learned about SUDEP and realized that she could pass away from a seizure, and when Adelaide passed away, it really shook him. He didn’t think of that and didn’t think of her that way. He is always concerned. He’s like, “Mom, what if our house catches on fire and she can’t get out because she’s slow? What are we going to do?”
He always just thinks about every little thing for her and it’s so sweet, but it’s heartbreaking as a parent. You always want your siblings to look out for each other, but the amount of worry that he has as a child, he’s a very empathetic, sweet boy, and the other day, she had her first seizure, full blown seizure at school. They called him in and he wanted that. This isn’t something that we put on him, because they’re at the same school for a year.
He was so helpful and I think he wanted to, that’s his way of giving back. He wanted to be like, “Nope, you’re doing everything right. This is what it looked like.” It was very reassuring for the staff at the school who’ve seen videos but hadn’t seen this yet. For him, it was just a way to be so helpful and help his sister, because he does love her so much, but it takes a toll. There’s no way that it cannot. I do think one of the things, similar to him and Jackson talking, for a while, he was in a support group of other kids of the siblings with kids with disabilities.
I think that’s a great thing, because they get it. He can talk to his other friends who will listen about Ella, but you don’t understand until you’re in that position. I think that’s really helpful to find something like that for your siblings.
Kelly Cervantes:
Absolutely. I couldn’t agree more. You are a wealth of information when it comes to IEPs, when it comes to medications, when it comes to second opinion, siblings, champion events. You’ve been doing this for 14 years now in this with Ella.
What advice, what are some of the most important piece of advice that you would give to parents who are new to the epilepsy world, or maybe just a year or two in, and they feel like maybe they have a handle on things, but we both know that it takes more than a year or two to really wrap your head around what you’re up against.
Shalee Cunneen:
One day at a time, right? Don’t look too far out, just one foot in front of the other, one day at a time. Focus on what’s happening right now. Try not to get ahead of yourself, and think about everything that could happen and might not be, because I feel like you get, it’s so easy to do that. We would try to focus on one day at a time. I know that talking to someone who, like for example, when I met you, I met you at the hospital. You guys had just came here.
Miguel was rehearsing for Hamilton, and you reached out to CURE Epilepsy, and I came in and met you, and I feel like just having someone to talk to who knows a little bit, who can help you answer the questions, who can tell you, “These are the questions that you need to ask. This is what you need to push on.” Trust your gut. You’re a mom, you get it, or a dad, whoever you are, a caregiver. You kind of know when something’s off. You have that ability, and just don’t be afraid to push for what you need for your child, because the squeaky wheel gets the grease.
There’s a reason that people say that, and I am not always, that was hard for me at first to kind of be that annoying person. I’m like, “Nope, nope. This isn’t working. Call me back.” I called again, and again, don’t go down the rabbit hole of the internet, but try to reach out and try to find someone that you can talk to. I kind of stay away from the Facebook groups, just because they can be very helpful, but I will ask my provider or someone like, “Can you put me in touch with someone or reach out to CURE Epilepsy?”
I love talking with new parents and helping them. I don’t love that I have to do that, because you don’t ever want to be a member of this club, right? This isn’t, “Oh, can I be in the epilepsy club?” It’s not the cool place to be, but once you’re there, you will find there are so many parents, and everyone’s epilepsy journey is different. That’s something that they’re all different, everyone’s seizure type and what they’re going through, but hopefully you can help by talking to someone.
Kelly Cervantes:
Yeah, absolutely. Shalee, thank you so, so much. I’m so happy to have you back on the podcast to be able to chat with you and share you with all of our listeners and watchers, because you truly are a light and a wealth of information, and I just love your family to pieces.
Shalee Cunneen:
Right back at you. Thank you so much for inviting me to be on. This was wonderful.
Kelly Cervantes:
Of course. Thank you, Shalee, for sharing Ella’s journey, and congratulations on the 10th year of Ella’s Race. Thank you for all that you and your family do to raise awareness and funds for epilepsy research. CURE Epilepsy is the largest non-governmental funder of epilepsy research, having raised over a hundred million dollars for epilepsy research since 1998.
Our mission is to fund breakthrough research that will transform the lives of people with epilepsy as we lead the search for a cure. If you would like to support our mission, please visit CUREEpilepsy.org/donate. Thank you.
Legal Disclaimer:
The opinions expressed in this podcast do not necessarily reflect the views of CURE Epilepsy. The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified healthcare professionals who are familiar with individual medical conditions and needs.
CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical conditions be made in consultation with a patient’s physician or other qualified healthcare professionals who are familiar with the individual’s specific health situation.