S3E8 Gina: Narcolepsy Through a Parent’s Eyes

When Gina’s six-year-old son began showing unusual sleepiness, tantrums, and sudden collapses, she never imagined it would lead to a diagnosis of narcolepsy with cataplexy. In this heartfelt and insightful conversation, Gina shares the highs and lows of navigating a rare sleep disorder as a parent and caregiver.

From the emotional rollercoaster of seeking answers to the relief of finally having a diagnosis, Gina offers an unfiltered look at the realities of raising a child with narcolepsy—balancing treatment trials, advocating in the school system, managing emotional well-being, and holding the family together through it all.

She discusses the transformative moments that shifted her perspective, the importance of trusting maternal instincts, and why building the right medical team is vital. Gina’s story is more than a caregiver’s account—it’s a testament to resilience, advocacy, and love.

Whether you’re a parent, a person living with narcolepsy, or simply curious about the human side of chronic illness, this episode offers both practical wisdom and heartfelt inspiration.

Key moments:

• 03:13 – First symptoms and the long road to diagnosis
• 06:03 – Receiving the narcolepsy diagnosis
• 12:02 – Learning to trust maternal instincts
• 15:14 – Puberty’s impact on symptoms
• 22:15 – Caregiver grief and acceptance
• 36:46 – Navigating school accommodations
• 39:35 – Final reflections and words of encouragement

Transcript

00:13 - Kerly (Host)
Hello, welcome. You're listening to Season 3 of Narcolepsy Navigators, brought to you by Naps for Life CIC. Narcolepsy Navigators is a podcast for raising awareness of these fascinating illnesses through a deep dive into the lives and individuals living with narcolepsy, idiopathic hypersomnia and Klein-Levin syndrome. I'm Keri Boger, the founder of Naps for Life CIC, and welcome to our stories. Hi everyone. Welcome to Narcolepsy Navigators. This is Kirli, your host. I have narcolepsy type one, and today we're here with Gina. Gina is a mother and her son has narcolepsy type one, and today we're going to have the caregiver's perspective. Welcome to her story. Hi Gina, how are you? 

01:01 - Gina (Guest)
Hello Kirli, thank you so much for having me. It's always so nice to see you and I think you're doing amazing work. You're bringing so much awareness and support on the front lines and you do so in a very consistent, thoughtful manner. So I was really excited when you asked me to do the podcast, because I always like spending time with you. Oh, thank you. 

01:24 - Kerly (Host)
I'm glad you accepted, because this is a new avenue which I definitely wanted to go down bring in caregivers on and also spouses on to see what was their take on things. 

01:35 - Gina (Guest)
I think that that's a discussion that I often don't hear about. Is that other piece, that other side of loved ones caring for those with narcolepsy, parents, grandparents, any caregiver of a child? I come from the child perspective because our son was six when he became symptomatic. 

01:58 - Kerly (Host)
Before you go into that, I just want you to introduce yourself. What country are you residing in and what do you do for a living and like a hobby of yours? 

02:10 - Gina (Guest)
Sure. So my name is Gina Singh and I am from America. I live near San Francisco, california, menlo Park, and currently I am the executive director of Sing Family Initiative, which is a nonprofit that focuses on two main initiatives One is learning disabilities for children and the second is for narcolepsy. Very nice. 

02:41 - Kerly (Host)
And you are a mother and a wife. 

02:44 - Gina (Guest)
Yes, so far today. Yes, I'm a mother and a wife. I have three beautiful children and indeed one of them does have narcolepsy. I have been together with my mate for about 26 years and I'm grateful that we have weathered many, many storms, including the journey of narcolepsy. There are many, many storms, including the journey of narcolepsy. 

03:06 - Kerly (Host)
So let's hear about that journey. So what year was your son diagnosed? 

03:13 - Gina (Guest)
So he was actually symptomatic at the age of six. 

03:17
It was an early onset for him Very early and it was a very gradual onset. It was not acute at all, it was very gradual. It took about three years to diagnose him and we actually received multiple diagnoses of everything under the sun. Some of them were quite scary that his life expectancy would not have been too long and the symptoms sometimes were very intermittent. And that is what was so confusing. You know, one minute we might be in the emergency room because we didn't know what the cataplexy was and it looked like a stroke. And then the next minute we're looking at behaviors and we're like well, maybe there's a behavioral issue. So I remember I was at a conference one year at Disneyland in California and my friend was with us she happens to be actually our family physician and she says to me Gina, no child falls asleep at Disneyland, and here our son is free, he can't wake up. And I thought to myself yeah, like this, that's right. What kid falls asleep at? 

04:28
Disneyland yeah, this is like the most exciting place to me, you know, and you know, by the time you're on year three of trying to figure out what's going on. You're in it where you know certain behaviors or symptoms just became normalized. You know, and you become like immune to it, and it wasn't until someone else said to me this is not normal. 

04:50 - Kerly (Host)
So what behaviors were happening like at the beginning? 

04:53 - Gina (Guest)
that were the end the excessive daytime sleepiness. But even at six years old he would take naps, you know, after school. But this was gradually a little bit more than what was normal Pantrums, because he was deliriously tired, but us not knowing that he actually wasn't getting very good sleep. And when we got back from Disneyland she actually ordered a sleep study at UCLA and we got in right away and he did a nighttime and daytime sleep study. We consulted with the chief of sleep medicine. She was a neurologist and this was a no brainer. It was a slam dunk diagnosis that he had narcolepsy with cataplexy. 

05:41 - Kerly (Host)
When your friend who's the physician. When she suggested to do the sleep study, did you have any idea of what would come up? Did she give you examples of things that they might find? Or it was just like okay, let's do the sleep study and see what happens? Yeah, no clue. Okay, when they told you you had narcolepsy, had you heard of narcolepsy before? Did you know what it was? 

06:03 - Gina (Guest)
Well, I have a nursing background and I had a friend whose mom had narcolepsy and I was never around his mom, but he just briefly mentioned it. But I had no concept of what narcolepsy was right and I just remember receiving the diagnosis and I don't know if I'm the only parent that felt this way, but I was really relieved, I was really happy because we weren't dealing with a life-threatening diagnosis. So remember, for the past three years we're like going all over the state of California seeing different specialists geneticists, neurologists, and you know everyone's like throwing out these different diagnoses. And when I got narcolepsy I'm like, oh, okay, we can handle this, we're not gonna die. Yeah, right, right. And I remember us going to go get his toy because I said you know, if you do this sleep study, I'll go get you a toy. 

07:01
I'm always bribing my kids and I go in and the woman behind the camera I'm like you're not going to believe this. I said he has narcolepsy, isn't that wonderful? And she looks at me and she goes my dad has narcolepsy. And I was like really, I mean, how ironic that was. Yeah, and she said yeah, he never really slept in bed. He would sleep all over the house because he just couldn't sleep. And then I called my husband up and he's in medicine and I'm like you are not going to believe this, he has narcolepsy. After all these years of trying to figure out and being like this emotional roller coaster and severe anxiety, I'm like it's narcolepsy. And the phone kind of went silent and I think he understood what that meant more than I did. 

07:49 - Kerly (Host)
In a different way. So while you were more so like happy about it, yeah, I was like, oh okay, we can handle this. 

07:57 - Gina (Guest)
Like, what's the treatment? You know? Because in nursing school they don't really explain it and it's a very superficial definition that we know. Narcolepsy is not just a sleep disorder, you know, it affects every aspect of your life and every system of your body. So ignorance was bliss in the beginning, right, and we started the typical protocol. But that was just not helpful. He didn't respond well, with the old version, old treatment version. So I thought to myself, well, let's get a second opinion just to make sure that we are indeed dealing with narcolepsy, because it's just so rare. 

08:40
Yeah, and he's so young, yeah, and he's so young, you know, and we really wanted to make sure that this is what we're dealing with, especially since the medication we weren't really seeing to be very effective. So that's when we decided to get that second opinion, type one, and we just started the typical journey of trying different medications, sleep hygiene. But you know, it's very, very difficult when you are diagnosed as a child and especially so young. You don't have the language skills to say I feel this way or this medication makes me feel this way how? 

09:31 - Kerly (Host)
did you know like an observation, but that was very difficult how? Was he articulate, like you know he's not like he's not being like what's the word? Like he's not being fussy, you know. You know, like a child that's ill and someone might think, oh, they're just being extra or fussy. But no, they're really trying to tell their parent that this is not working. 

09:53 - Gina (Guest)
I'm going to tell you that I believe every parent and I as a mom, I think I was very intuitive and I had to rely on my bond and connection and my intuitive feelings very strongly. And I'm a very spiritual person and I really had to pray very hard for insight and guidance because it truly was a lot of times a gas and constant observation. I remember writing daily notes on, you know, every time we started a med and just observing him and I think also my nursing background really helped me that training being able to, you know, have the skills to observe. You know I was trained to observe patients, right, yeah so, and be able to track that and track the data. So that came in handy. 

10:47
But when you have a young child, a lot of times they're going to express themselves through behaviors. And I knew that this was not a behavioral issue because I knew my son right and this was very different. This was not who he was, his character. So I knew that we had to keep searching for answers. And just because you go to the doctor, you get a diagnosis and they put your child on medication, I assumed at first in the very early stages okay, we're done. No, that's not the case. Everyone reacts to medication differently. Everyone's constitution is different. Some people need more, some people do better with less, and you know that has been the learning curve. And then, when you're deliriously tired, you also have a hard time emotionally regulating and it's hard for you to even talk, you know, never mind having these very detailed conversations about how you're feeling. So we had to be keen observers, and one thing that I learned as a nurse is there's always a reason why. 

12:02
There's always a reason why someone behaves the way that they do, and I did not assume that just because we're on medication and he's supposed to be treated that he was actually treated and that treatment fit his needs and worked in his body. So some of these behaviors were also symptoms to me that the medication was either too much or not working or not enough, you know. So I think that's one thing that I really developed on this journey is that keen sense of observation and listening to my motherly instinct. 

12:43 - Kerly (Host)
To find that very interesting because, as someone who has got narcolepsy when I was 15, and so I got diagnosed when I was 18, and a lot of people who have narcolepsy got narcolepsy as an adult you go through this stage where people have to go through different medications until you find the right medication. But sometimes I find that even if you don't feel like the medication is necessarily working or in your body, the doctors will push and say no, you need to take it for longer, you need to have it for longer. No, you can't just make up your mind so quickly. You know you should take it longer to check whether it's really working in your body or whatever. Even if nothing's happening, they usually still push. So I can't even imagine what that must have been like, like for, even like as a child. But at what point do you say, okay, yeah, I've observed this enough and we're no longer taking this particular one. 

13:37 - Gina (Guest)
You know, and I think that's why it's so important to create a team that you can work collaboratively with. 

13:46
It's not just you go to the doctor and you just sit there and listen to them. You know this is a team effort and you have to have that relationship and that trust that that doctor is also gonna respect your input you know respectfully given but that input because you are caring for that child on a day-to-day basis. You're observing him or her daily. So you know the caregiver and the patient is really a big part of the team. You know they're at the front and when you're dealing with something so complicated and complex, it needs to be a team effort. You need to find the right match. When it comes to your sleep specialist, that is vital and we've had some amazing doctors along the way. Some of them have been neurologists, pulmonologists but it was really the right match Docs that are willing to listen, think outside the box, not just support but to support us as caregivers. So it's really that holistic approach of you know, making sure that you are collaborating with doctors that really you match well with. 

15:07 - Kerly (Host)
So, as he got older, what were the changes? Did you find there were changes as he grew? 

15:14 - Gina (Guest)
Oh, you know, I think puberty definitely makes things worse. You know, you have the hormones that start flooding and how that affects sleep and in the teen years their rhythm usually it gets off, where they want to sleep later and to go to bed later, which is very normal, and then during the teen years they need more sleep and with narcoleptics they struggle to sleep. So I think that teen years were really difficult. For sure, they were really difficult. 

15:49 - Kerly (Host)
And how did you go about trying to manage that or navigate that? 

15:52 - Gina (Guest)
Today we have a lot more support for caregivers and today I have been able to really tap into the expertise and experience of other narcoleptics and other caregivers, parents of children. So, for instance, Gina Denise has been really amazing in, you know, supporting and educating the community about diet and lifestyle, and definitely for our son, diet and lifestyle and definitely for our son, diet is the foundation of his treatment, for sure. You know, carbs make him more sleepy and gluten definitely affects him. So more of a low carb close to a ketogenic diet he does very well with and it also improves sleep and it helps medications work better. So, as a result, he really only needs very low doses to be effective. When he is not complying with the diet, he's definitely more symptomatic. That's very interesting. 

16:58
Yeah, yeah, and also like stress management. You know that has been really helpful. He's worked a lot on strengthening his mind, his coping skills, his interpersonal skills, communication, conflict resolution. He's constantly trying to navigate the emotional side because his narcolepsy is triggered by intense emotion. 

17:30 - Kerly (Host)
I don't think we talk about this enough. I found it interesting when you were saying at the beginning about the emotional impact it was having and you were noticing, and I think maybe it was more acute because he was a child. He was only six and I remember meeting a lady at a conference and her child had just been diagnosed and she was five and I had never met someone who had a child been diagnosed so early and it was interesting because she was saying how she thought they were telling her it was a brain tumor and all these negative things. And then when they said he had not had child had narcolepsy, she was like so relieved and she's like, oh, it's nothing. Then you know I can live with this until she realized. 

18:06
But then she goes before they were saying the child was like throwing food like on the floor or wouldn't eat certain colored food, like all these like like weird things, tantrums that people were saying that she was having and she was like no, this is not tantrum, this just started happening with the sleeping and everything. It all has come together like as a passage. Yeah, and so as adults I don't think we talk about the effects of narcolepsy on your mood as much as I guess, maybe because as adults you have to regulate your mood to be in public, to be a good member of society. Well, as a child you don't actually need to do that, you just sort of be. 

18:48 - Gina (Guest)
Right. And what happens when you get diagnosed so early? There's developmental impact on that right Because you know this disorder is very isolating socially and emotionally and when you're so incredibly tired, I found as a parent it was very difficult to well, what can he control and what can't he control? What kind of limits can I set? That's reasonable Because I also have to parent him, but it's very difficult to parent somebody that you're still trying to get treatment for because he's literally not sleeping still trying to get treatment for because he's literally not sleeping. So we know that after like five days of people not sleeping, they can go psychotic. 

19:32
There is a tremendous impact on the lack of sleep and lack of restorative sleep and you know the neurotransmitters that are affected by that. It's not unusual to see depression, anxiety and then all of the social impact that comes along with that Not being able to participate with friends, going out because of energy levels or not feeling that you know, being accepted. I mean, that's already hard as a teenager, as it is, you know, never mind having this other layer. It's complicated when you're diagnosed so young and that's why the support that's available today. You know I would not have met some amazing moms like Jennifer Bond, who you know does CAM conference and she's the one that really kind of forged the way of baclofen, the treatment using baclofen for narcolepsy, specifically for children, and baclofen really is what restored our son's sleep architecture. So we did a sleep study without baclofen really is what restored our son's sleep architecture. So we did a sleep study without baclofen. He only went in stage one sleep. Then we did a sleep study with 10 milligrams of baclofen and his sleep architecture was normalized. So that was really definitely a medication that and continues this day that he uses. 

21:08
But I would never have known that Baclofen, which is a very old drug, they even put infants on it. It's not, you know, it has very low side effect, great safety profile is used for narcolepsy. What is it normally used for? It can be used like for spasms. They'll use it. They even use it for infants if they have infantile spasms or MS. But it is sleep promoting. It seems to resolve the sleep architecture issue in people with narcolepsy. But I would not have known that if I wasn't on Facebook right, and connected with that mom, because certainly my physician did not have a clue about it at that time I think that there's a lot more parents going into their physician and they're becoming more aware or, you know, there's other support of parents. 

22:15
But I didn't have that 17 years ago. It was a very lonely world and as a mom, as a caregiver, I went through my own anxiety and depression. Because you know there is and sometimes we don't talk about this piece enough I felt definitely a grief process. 

22:34 - Kerly (Host)
Yeah, I was just about to see that. 

22:36 - Gina (Guest)
Yeah, yeah, I definitely did. And you know there's really no shame about that, because when you give birth and you have this healthy baby, we all have our expectation. And I always say that I plan and God laughs because you just don't know what can happen in life and you know it's not wrong or right or good or bad, but I have a different son today, good or bad, but I have a different son today. And so I had to transition and adjust to that and I had to mourn the son that I had and embrace and rebond with a son that I have today. 

23:19
I think a part of that grief process was my denial, which, I have to say, lasted for many years, but that denial actually was not helpful to him at all. I had a really hard time saying the word disability and, you know, accepting that, because if I said it then I would say that my son is disabled and it was hard for me to let go of the son that I had given birth to. I remember sitting in a doctor's office one time and this woman comes in in a wheelchair and she comes in with her mom and she was very strong, has been through it, and she was very strong minded and I don't know how she knew this about me. She must have felt it. And before I left she says to me your son is disabled and she said don't be ashamed of that word, because that word gives him the resources he needs Live an independent life. That's equitable, yes, and you cannot get in the way of that. 

24:22
Yeah, don't rub him off that, yeah, and I was like, oh my word, I had no idea that my denial and my own grief, my inability to say that word, was obstructing him getting what he needed. And that was a huge shift for me, that day where I was like, okay, things have to change. So I started to embrace the accommodations that he needed, I started to say that word, I practiced it because he had no problem in saying it. He had no problem. So this is what I'm talking about, when this has been the greatest university of my life there is no school, no degree that I could have ever gotten that taught me the lessons that I have learned on this journey, you know, and it's like going into the fire of refinement Wow, yeah, the fire of refinement. 

25:25
So today I'm very grateful that you know he takes the lead in his own treatment, that's good, his own management, and that he's very comfortable with who he is. And there's absolutely. He totally embraces it and he says, mom, I have narcolepsy, but I am not narcolepsy. I have it, but I have so many other things that make me me and I think, as a parent, I was so worried about what his future would look like, what would his schooling look like Long term effects of lack of sleep. You know the physical, the spiritual, the financial. As caregivers, we worry about the whole picture, right? So I think what was helpful for me is to talk to other parents, but also to get myself the support that I needed, because obviously my son was comfortable with himself. 

26:25 - Kerly (Host)
Yes, but I had to come. That's a really good point, isaac getting the care that you need, because you always hear this like, especially when people have had like a child or a spouse that's had like cancer for a very long time and then in the end the caregiver gets ill because all their attention was given to the person they were caring for, to the point of the detriment of not even caring for themselves. 

26:52
So I think you made a really good point, and it's so important for the caregivers to look after their mental health and their well-being yeah, no, totally. 

27:00 - Gina (Guest)
And I think what happens to when you have a child that has narcolepsy, like my son slept through the night for the first time at the age of 16. So the amount of sleep deprivation that I felt and my husband felt because we would take turns, was unbelievable. And at the same time you have other children in the house, you're still trying to work to pay bills and you're trying to also do case management and getting into specialists and doctors and different treatment. You know, trying different treatments. There's a lot to manage. It's a job in itself, totally it's a job in itself. And trying to have this normal family life, I mean that's a lot to juggle, you know, and I think that sometimes you know there, I know I felt this like there could be a lot of shame if my son is not functioning at a certain level. Right, but what I've learned on this journey, it is like a roller coaster. It goes through peaks and valleys and sometimes you're doing well, sometimes you're not. I've had to learn how to ride the wave. 

28:09 - Kerly (Host)
Yes, anorexia comes in waves If you're young or someone who might be newly diagnosed and they might not be feeling it so much now. I just say enjoy it while it is where it is, because unfortunately it's not going to stay there. Mm-hmm. 

28:25
It's a lifelong condition until we get a cure. You need to prepare yourself for when it's going to dip, because it will dip. You're not going to stay on the high forever. It'll be five, six years. You're on a nice high and you think you can cope with everything, and it will dip. It will dip. It will catch you off guard. You have never survived through it and now you're going to come out the other end. 

28:46 - Gina (Guest)
I think, as a parent, I really was hoping like this magic pill would appear. And he just takes it every day and life goes on, yeah, and that's really not what has happened. 

28:57 - Kerly (Host)
But that's the way the doctors sort of explain it. I found, even when I was diagnosed as a teenager, that's how they explained it to me. You just take your pill and then you're back to normal as long as you take your meds, right. 

29:10 - Gina (Guest)
The other thing that I learned in reaching out and talking to other moms is really the importance of treating the sleep issue. You know the distorted sleep that was just like. 

29:21
That's the critical point and I think initially typically stems are given and you know this will help you stay awake all day and what I saw was an accumulation of a sleep debt happening and you know you become very wired and tired. So that's where that keen observation I had to have that keen observation as to what was going on with medications and it's kind of like with our son. It's kind of like a seesaw you get the nighttime, you know doing well, but then the daytime kind of goes off a little bit and you support the daytime but it may be too much and then it affects the nighttime sleep. So balancing that seesaw is really hard and depending on what that person ate that day, it could also fluctuate. So what we have learned is we have to have a pretty consistent lifestyle and team to lessen that impact of those like up and down. 

30:26
But you're still going to get it. It's not going to be perfect. So as a mom, I have learned to go with that and, you know, not get myself overly anxious and worried, which is not always easy. But that's about my own self-care and I have to make sure that's not projected onto him. You know that's something that I have to deal with internally. He has enough to deal with. So, that's where that piece comes of. Where's my support? You know, am I getting my sleep? And I, you know how's my quality of life. 

31:04
I went through this period with my grief that if he could not enjoy life or be happy, not neither should you. Exactly what happened, was? I remember I did whatever I had to do. So we had this therapist come to the house and just support the whole family and she's looked at me and said if you don't choose life, why would he? Wow, and you know, it's these little jolt that the universe gave me that shifted me, that the universe gave me that shifted me, and I'm like, okay, I have to choose life so he can see me living. 

31:46
So, he will be motivated to live yes. 

31:51
And that's when things started to change immediately and the whole house shifted. Oh, wow, you know. I think it's important for parents to to hear you know that side, that family dynamics every day are not like always happy and rosy, and the feelings that you may have as a parent of like that loss, that mourning. And how do we now move forward and be comfortable with what we were uncomfortable with and accepting that our son or daughter may need resources that not just helps them but helps everyone, the entire family, right, and I think moving forward, everybody has to move forward. My children, my daughter experienced that sense of grief because she was very close with him and all of a sudden he's not motivated to play, he's not laughing, and so helping your other children transition to a new normal. 

32:54 - Kerly (Host)
Yes, because that must be. I can't imagine being because the age difference between me and my sisters is five and six years. I can't imagine if you were. The age difference between me and my sisters is five and six years. I can't imagine if you were a two year or 18 month, apart from a sibling, and then something dramatic sort of happened and they changed and they didn't want to play with you or didn't have the energy and stuff anymore. It would make you feel almost a bit like rejected and stuff, not you know, even if an adult explains to you that it wasn't your fault or whatever. But, as a child, understand all of those feelings and things and why are you giving him more attention than me? 

33:29 - Gina (Guest)
Right, and it's not that we're giving him more attention, but the needs are more intense and they're different. You know through the eyes of the other children, we had to get professional support because we didn't really know how to navigate that. And then, with each other parent kind of processes it differently and I'm more verbal about my feelings where you know his dad isn't and how do we support that within each other and giving each other space when needed? So I think I realized that I had to be willing to listen to other people that had the experience and also the expertise to help us navigate this that's beautiful. 

34:18 - Kerly (Host)
I think that this is something I'm very passionate about, that I think we've got to work on changing in the community. I love the different things that you did with your family to navigate that and I think that's something that could be used especially to help adults in this situation, because, although it was dealt with differently as a child, I think that people diagnosed in their 20s or their late teens are experiencing the same things with their siblings, but because you're older, there might be an even bigger disconnect with how the sibling is taking the situation, on how they're understanding the illness. If you're an adult and your siblings are adults, do they understand it? How do they feel that your parent is navigating the situation? Do they feel that you're taking advantage of or milking their parents' love? You know different things that. 

35:10 - Gina (Guest)
This is what my mother-in-law, but they're not so open to talk about it as in maybe a child would and also, like you know, his needs were a little bit more obvious, but I had to make sure, as a mom, my other children's needs were not minimized, because they were just as important An extended family I mean there's some great YouTube videos that I would forward his grandparents and his cousin because it just really explained better than I ever could about what was going on. 

35:44
Because when people think of narcolepsy they're like oh, you just fall asleep and it's not like that, like why can't you come and visit us? Why can't you just stay at grandma's, you know, for two weeks out of the summer, because it's not that simple. You know for two weeks out of the summer because it's not that simple and we have to follow a strict sleep schedule. And their perception may be like, wow, you know you're kind of strict, but you don't understand the consequence of that lack of consistency. Yeah, you know, and his nighttime sleep and that the quality of that really determines his daytime function. 

36:24 - Kerly (Host)
Yeah, and it's more important to keep that consistency and that routine in check than it is to make someone else in the family happy. 

36:32 - Gina (Guest)
Exactly. So you learn quickly not to be a people teaser. Yeah, like that was cured, you know. Like no more of that. We're not teasing anybody. 

36:46
And the last thing that I wanted to touch on really was the school journey, because that was scary. And you know it's hard for any child to sit in a classroom seven, eight hours a day and you know listening to lectures and and doing work that they may not find interesting. So you add a kiddo that's super sleepy, that you know. It's really hard to find the right treatment, you know, because a lot of the treatments back then were not for children, so we had a very limited option. I think that made me the most anxious is, you know, just getting to school, making it through a day. You know the accommodations of napping, navigating teachers that just did not have a clue, or other students that didn't understand what was happening. With his narcolepsy, he could look awake, but he's really asleep. That made me very anxious and I learned a huge lesson. 

37:50
When it comes to that, things do eventually work out and there are many ways to educate your kid. Ways to educate your kid. I learned that seven hours of school is really one hour of academic teaching, wow. So I had to create a very customized, individualized program for him, and I was very thankful that the school worked with me on that. 

38:16
And that's really what our initiative focuses on is the educational piece, and we're right now focused on creating a program, partnering with other people educational specialists, attorneys, other resources for parents to create that customized, individualized education plan, because in the United States every child has a right to a free and appropriate public education and so there are ways non-traditional ways to get them through school and thankfully our son loved to learn, so he was a very avid reader. But you also have the social and emotional piece. That's just as important, and narcolepsy can be very isolating. Yes, I wish back then I had the support, but that's why we want to give parents that support today. How to navigate that and the expertise that we kind of learned on our own journey, yeah, and to share that with others. 

39:23 - Kerly (Host)
That's really nice. So, gina, any last statements you'd like to say to the audience? 

39:35 - Gina (Guest)
I think that in every situation my friend used to tell me how a pearl is made and she said to me you know, it's really up to you how you choose, how this is going to end up. And I realized early on that I had some choices that I had intentionally had to make and those choices affected the rest of the family and how the rest of the family reacted and navigated this huge change in our lives and how our son was going to embrace his new normal, especially being so young. Us parents really had to lead by example of how we were going to get through this storm. And I tell my kids it's kind of like Sully. You know that story of Sully where he landed the plane on the Hudson. 

40:30 - Kerly (Host)
River New York. 

40:31 - Gina (Guest)
City and I said I feel like I'm landing this plane. There might be injuries, but I don't want any death. It's got gotta be easy. It doesn't mean it's gonna be easy, so I just hope that you know, coming forward and coming on your podcast brings some kind of measure of comfort and validation and, um trying to be authentically honest that although it's not an easy journey, the support out there can make a huge difference in the quality of life, the treatment, the early diagnosis and the support for the family as a whole. It's different today, mm-hmm. 

41:16 - Kerly (Host)
Well, there's one last question. We usually ask all the people who come on I'm not going to be able to do it. I'm not going to be able to do it. I'm not going to be able to do it. I'm not going to be able to do it. I'm not going to be able to do it. I'm not going to be able to do it. I'm not going to be able to do it. I'm not going to be able to do it. 

41:37 - Gina (Guest)
I'm not going to be able to Cool I would Thank you. 

41:41 - Kerly (Host)
Thank you for coming on, gina, it was lovely hearing your story and we have so many nuggets in there that people can learn from and put into practice and help them do their journeys. And we usually end the podcast by saying happy napping, happy napping, you're doing great work. 

42:01 - Gina (Guest)
You're doing great work and it's a privilege for me to support you, and I'm going to do everything I can to continue to support you. Thank you very much, gina. I really appreciate it. Okay, you have a great night. Yeah, you too, darling. 

42:14 - Kerly (Host)
Bye, bye-bye. Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice. Narcolepsy navigators is produced by a team of volunteers working for the naps for life cic, which is a non-profit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our podcast and join our sleep disorder support group by visiting the website wwwnapsforlifecom. If you or someone you know has a sleep disorder and would like to share your story on narcolepsy navigators, please email us at narcolepsy navigators at gmailcom. You can also support us by donating at the website. Happy napping everyone.